Autistic Burnout: Defining, Measuring, and Understanding with Dr. Dora Raymaker

Great point regarding research that shares this characteristic other ingredients with the Autistic community. The intersectionality regarding this is also worth looking at.

I have issues with noise and my resources only allow me to live in noisy places. i can use as many headphones and DB reducing earplugs as i want, and it only reduces half of sounds.
Last time i was living in a city, i didnt sleep for 2 months and got meltdowns daily, police would get sicced on me and my hypersensitivity is still not at all respected.

Psychologists made a report about me and concluded that i am suppose to live at an institution that specialises in autism or live in a secluded, quiet place.
None of which has been pursued by the state, i know i have to live alone in the countryside to be able to handle my handicap...
I can rent something cheap and get put in jail or forced into "treatment" or i can save money to buy a house and actually treat myself in a decade, i cannot last a few more years like this.
The institution i live at, has puts arcade machines up next to my living quarters, put up a large bell and ring it daily, the manager will shout at me and tell me to stop acting like a child if i get a meltdown outside.
A few months ago i was chatting with a neighbour and someone walked out the door and rang the bell ( I sit in my living quarters every day, with ANC headphones on, at lunch and dinner time) But forgot to have a grasp on time at the moment, a meltdown occured immediately and i tore the bell off the wall, it is bolted, it has been gone for few weeks now and they have already put it back up, yesterday just thinking about the bell made me get a meltdown and now they are threatening me about it.

The manageer is not a good individual and his presence make meltdowns worse, especially when he follows me around.
The caseworker has told me that they do not want to allocate resources to my treatment "because i dont work with the caretakers"
Institution just decides that i should get used to getting meltdowns and when they ask me"what can we do to help you" I simply tell them the truth and they walk away, discuss it, come back and tell me they cant do anything about it. (it literally costs nothing to plan around)
A few months ago a new worker made sure that they quiet down the pool table next to my residence, but i know in due time they will "forget" about it and introduce a new noise factor.
In jest i have said for years that they will turn that room into a music room, it has partially come true, just not with music...

When the world spanning flu occured, i was isolated for 9 months and i had the calmest time of my life. No interacting with people who dont care about me. It was great.
Since then they have put more noisy things up and i get more meltdowns nows.

most of it is hating your fucking job in a dying world you can't help but to see clearly what's going on in front of you.

Love doing burnouts!! I am also Autistic!

I wish there were a system of other ASD folks who were local that could help with cooking, shopping, etc because we "get it". When I'm NOT in burnout I'd love to help others.

Can we make an app? Like ubereats? To help connect people locally.

Because waiting for politicians to do anything... we're going to literally lose autistic people to more suicide waiting around for that!

Excellent research and discussion

Who can I contact in the DC, MD, or VA if I know an adult who experiencing this?

Idk if I'm experiencing burnout or severe CPTSD or both. Ive been masking all my life while fighting to suppress trauma. I'm barely able to stim to release anymore nothing I did or masked even work anymore. I've always felt like I've been operating on overload but now it's like stuff is frying, newest thing is painful to vocalize words

There’s an amazing community on TikTok- I’m 48 and I’ve found lots of late diagnosed women and we share experiences

Recently diagnosed myself at 58, misdiagnosed from many
" professionals " through my life. The biggest thing for me is the absolute lack of recognizing this especially in woman, and having to do my own research. Plus societies lack of knowledge and utter abuse in many areas of my life. Left with cptsd, adhd, sometimes suicidal thoughts, especially being alone with no help, family or friends that never understand or care to. I've been trying to survive because of my dogs, that's all. Plus in poverty because I can't hold a job. Thank you for these vids, gives me a little hope and knowledge.

Amen 🙏, you're very right, is there anyone or place where I can get help telling my hole life , to make a book of how I was raised, in what it's like to have this Artistic ,unhelpful from a child to the years of 58 in a world that I felt was not my world, can you recommend me in this direction???

I'm looking for help to see what I can really do, in many subjects. It comes naturally, it seems strange, like I can watch a new movie I've never seen, I can watch a few minutes n tell you what will happen next , my wife doesn't know how I do this, I see ahead easily. Meltdowns is what happen to my mom, she never came out of it.

I have to process everything I do,in my head,where others can use what school was not a problem for them, I have a 4 grade education, it's getting harder cause I'm going bline, in there nothing wrong with my eyes health,to be fixed,had one uncle who was the same.

My Mom did good till I was around 16, in for some reason, she got stuck, in all she could do was sit for over 40 year's, I understand today what happened to her, uncles same, back then, if you see me face to face you might think I'm normal, but spending a little time with me , I can't hide it as good as when I was younger , even the new kids born in my family or showing same sines, yes good help is a blessing, all of us don't have this help.sad

Yes indeed

Have a big problem with doctors, for all the years being diagnosed with things I didn't have, n all the pills that I had to take, it's a wonder I'm hear to share my life a little bit at a time, I want to see how people take it, if I can pull down all this mask,it's so much masking from a little kid till resent. Pray for me,

I don't learn like normal people, I'm 58 years old, I have a fascinating mine.

I going through this now,finding ways to get out of this ,im doing some better, I have server Anxiety, ADHD, SLEEP Disorder, sounds, light, im working to see how to fine the me I lost sa a kid, it not so easy, but today I'm not giving up.

I have two sisters, in when I look back , me n my youngest sister was by our real Dad , cause put our oldest sister on a pedal, n said me n my youngest sister, was not his , our problems didn't come from him, to make it short ,I feel kids raised with parents that or loving n understanding, seems to do better in life, it's seems to me, a kid like myself, I was born with troubles my mom could not handle, so my uncle n Grandma raised me , uncles where same , but didn't know it, so they were drunks, in a bad way. N best person you could ever meet when sober, I've had a awaken a few weeks back, it removed a lot of bad past, I didn't learn in school like others, I learned more by seeing, hearing, trying,

I have a picture window in my head , with a very wide view, of how I look at everything that I don't know, I haft to look it up , in what I fine , when I add it to what a already know, then I can say or do most likely more than the normal people.

It's like someone has pulled the string of like from me, lost of skills is same, can't handle a ticking clock , how people talk to me I different manners, same.

This! I’m dealing with the tail end hopefully of autistic burnout. The fact that it is my fifth so far are the major reasons for me advocating for getting my ASD diagnosis, because if not this will probably be my life every 2-5 years. And I don’t know how many more I will survive even though I have a great support system in my family and friends. I’m about to start the process of getting my office diagnosis. On the topic of skills in the kitchen. When I’m not in a burnout I can cook even somewhat skilled in some areas. When I’m in a burnout, I almost need to be force fed to be able to eat. I can barely manage to go to the bathroom, in that state even if I normally could cook every dish in the world it wouldn’t help. I have a dishwasher and the only way I could have some thing to eat on was to use paper plates because even just using the dishwasher was to completed. When I’m not in a burnout, I can handle academic studies at a university level. In a burnout speaking full words much less sentences are to complicated. I really, really hope that you have managed to get further with the studies past covid. Thanks for the work you do! Autistic burnout is something you survive, and the thing you so far have put as possible help/ solution resonates with my experience.

Thank you for sharing. I am autism son  parent , I wish I could get information help from experts/ parents and create friendships

I'm not diagnosed with autism but so much of it fits my life. I am diagnosed with specific learning disability, autoimmune disease and mental health.

Not sure if you've worked it out yet but your results for masking not showing what you expected. Here are my thoughts.

1 There are many benefits to fitting in to society that may even outway masking if sustainable and efective. Such as income from good job and it's rewards. Aswell as being able to pay for services needed etc. As well as all the normal benefits. But would need to know where and what's needed to employ them. Which also makes me wonder about the efect of family and significant others in the background. Or the nature of the skills of the individual afected by autism. In regard to suport either in this case supporting and finding and instigating the administration needed. Or less likely for this scenario belittling and not helping such as your lasy you'll never amount to anything, you have to be able to do the basics before you can try the higher functioning things etc.

2. If not sustainable but was highly efective in the person's social context there would be a multiple efect of burnout when no longar possible. Because they lose both there daily functioning and the benefits of social connectivity. Depending on there personal suport at home would efect the outcome, speed of burnout and ability to achieve and recover from this.

3 If not sustainable or efective in there social context it wouldn't show much change. In fact may be benificial once these draining activities have stoped and life has adjusted around them. This group may be better off without there personal significant others if not supportive. But the range of suport in any of the scenarios could increase the variability you found.

Also my thoughts around medical masking is that it's different. It's work related that can affect others parts of there lives. For autism masking is required in all facets of life and work can have many benefits even self esteem building and relive some of the masking needed in every day life.also it's life long so where is the baseline control for before and after the masking activities for an individual. To me there would be a more significant efect of before and after for the medical profession as opposed to the masking itself because it's a constant for people with autism.

Burnout may also be more long-term fatuge of bodily systems rather than acute ptsd trauma and exhaustion. Not that I recommend it but it would be easier to test the impact of different masking types on cohorts that already mask but this is getting way outside my knowledge area.

Just my thoughts.

Another aspect of this might be that a lifetime of masking can lead to an eventual inability to mask as well and/or for the same duration as once was possible. It is as though after so many decades, the cumulative burnout results in our true selves winning the battle. I also want to add that the loss of skills hit home for me. When I was working so hard to mask and deal with sensory issues, my artistic talent seemed to dissappear. Now that I don't spend so much of myself on working so hard to mask my true self, my artistic talent has flourished.

I am currently experiencing what I think must be burnout. I am fairly high functioning, usually hyperactive, though it seems that when I really got to a point that I just can’t keep masking any longer, I also began to physically and mentally collapse. This has been constantly happening to me on a regular basis now. It’s been suggested that I’m suffering from migraines which is something I’ve never really experienced as I always said in my past that I rarely ever experience headaches. I’ve been so confused as to what is happening to me it’s also caused me much greater anxiety issues to the point I don’t want to socialise. I have found that when I stay home more and by myself I feel much better. This has also led to me feeling like I just fail at life as it’s all become too hard. I’m constantly trying to make sense of a world that is so dysfunctional and strange. I just want to work out how to know when it’s upon me again to try and prevent how bad I feel when all of a sudden I can barely move or function. When I recover I’m so relieved I madly try and achieve so much to catch up on the time wasted whilst feeling like a vegetable. At this stage I feel that the only way is to lower my expectations and slow my whole world down so that I feel I’m coping. I distance myself from people more so no one will notice. I’m an artist so I create and tell people I have to spend lots of time alone to develop compositions. I’m beginning to feel that I’m not suffering from migraines at all, rather severe burnout issues.

I wish there was an organization which would support and aid autistic people becoming actual autism academics and researchers. I am a firm believer that we must care for our own and not depend on people who don't share our experiences and problems. It is crazy that autistic people still have to turn to studies and literature devised by neurotypical 'experts' who are looking in from the outside and are biased by their own perceptions, priorities and misinterpretations. Autistic people are often highly intelligent and dedicated, we are the very best possible experts.

Ironically the tasks are something that could have been done but not in the way that people push it on somebody else’s schedule which doesn’t take into account other matters being juggled at the same tits like trying to carry many things where the people asking us to carry don’t know what else is being carried and insist we carry now at a certain way making it not possible so that all gets drops whereas if we had not been pressed upon to carry all at once, it could easily have been done. It is possible to carry with several trips and a break but if we are seen taking a break or not seen carrying what requested because we are carrying something else, the load is dropped on top of what we already have and we collapse. Shame on people for wasting each other needlessly and wasting the value of the other because some people have to insist on a certain way, and then value is lost.

It is all true. Wondering why on a physical level it happens. The triggers are very relatable. It’s dangerous becoming non-functional in many areas or too slow to do what is needed, and could seriously end up dead, either by accidental suicide or ending up outside without sufficient work or not able to get organize help and freeze or end up malnourished. Gaslighting is real, stupid, and asinine.

I always got sent to an endocrinologists due to high cortisol. Calling it burn out is just another way to say chronic debilitating stress. Obviously it's going to take it's toll, always camouflaging what comes naturally to one. It's heartbreaking. I'd be elated to have funds to use only on a pa in my presence. Helping me shop quicker, clean better and faster...sounds great. This was rather repetitive and tedious but got some good tidbits.

my 24 yr old son is in the of applying for disability services. too high functioning seems to be the problem. all of this resonates with my son's experiences and I believe he has experienced burnout during several times in his life

my burnout is maybe low-level long-term, but it is more pronounced in a certain day - so it's burnout within the day - frequent + acute, as well as chronic and ever-present

Where can I find the Aaron Bullis / Abby Sisterka quote about capacity building? Thank you.

Thank you for your work and reporting. You are on target.

If you suffered from childhood trauma, and/or are addicted sugar, i advice you to have a look to mitochondrial dysfuntion, to Jessie's Inchauspé's book and to NADH and NMN. You may be able to get rid of this fatigue.

Hi i think im on the spectrum nd found out that kabbalah relay helped me be more mindful
duz any one know if there has been a study on this subject ?

As an autistic woman diagnosed this year at age 39, I went through multiple phases of autistic burnout leading to a state of what seemed to be chronic illness. Tested for every autoimmune disease under the sun, spent thousands of dollars on doctors. All the tests continually coming back “normal.” I had many caring doctors who took me seriously (as well as many who dismissed me as a hysterical woman who was hormonal or mentally ill), but a screening for autism was never considered, let alone administered. I couldn’t help feeling angry when I first learned about autism in women and autistic burnout. I have spent decades feeling broken, sick, weak, seeking help from medical professionals and finding now answers. I just wish this knowledge would filter through to the PCPs. They are the first point of contact for many of us who have slipped through the cracks, and they want to help, but there is a veil over this concept.

In my experience a lack of systems within my mind as well as in my reality caused my burnout. When information and expectation overload our inadequate framework of understanding and ability logic is irreconcilable. It’s not perfectionism it’s an inability to prioritize as everything is equally important because so much is wrong with the systems we’re living within.

Being unaware I am on the spectrum until just the last few years, and from a lower income family whose resources to send children through college ( including scholarships, work-study programs, loans) were barely adequate for my older siblings, the whole prospect of going off to college was too overwhelming and scary for me. I also dreaded choosing a major, since I believed I would not have a second chance if I flunked or hated it once I got into it. The social part of highschool was almost too much for me, even in what was after all a small town school. I had no confidence I could manage any more. My grades would not qualify me for scholarships,

I watched a presentation of Dr. Raymaker's on this same subject and somebody asked her about a correlation to depersonalization and ASD and it went off like a bell in my head. Can you mask so long that in order to keep masking you have to remove yourself from yourself, like another layer/dimension of isolation/seperation when the physical means of care dont seem to be available or known of.

WE NEEEEED to CHANGE the name of “Autistic Burnout” as non autistic people think it’s just typical burnout and it’s SOOO annoying 🙄😖

Thank you so much for this. It was extremely helpful.

Very well done. Thank you so much for doing this study. I got married in May and due to increased demands on my home life, I’ve been in autistic burnout for several months. I recently reduced my work hours and have found it very helpful. I’m starting to recover some of my energy and executive functioning. I’m thankful my boss was accommodating.

Still not sure if I suffer from this or not

Yes, an autism peer support group, with professional help like the kids get.