livefreebehonest
New Member
Has anyone here experienced "autism burnout"?
Backstory: My name is DeeDee; I'm 35, female and level 1 Autistic(struggling to find someone who will perform an adult Autism diagnosis)with several co-occuring conditions.
I lived the majority of my life questioning if I was "normal"; I'm hyper sensitive to smells, touch, sound and tastes and I have a hyper awareness of myself and my surroundings: these and many other autistic traits I have resembled zero percent of my peers.
I struggled during school because my brain could not focus on all the different subjects at the same time. I am really good at some things but 6 different subjects in one day left me sitting silent in some classes wondering why I just couldn't get it and other classes I would almost annoy my class mates because of "always knowing the answer" or "always wanting to be the one to read". Most of my teachers saw me as a great pupil who did not goof around in class even when my brain could not grasp what was being taught (I sat at the front of the class if the seating was by choice).
I always (my entire life) wanted to appear like I fit in with everyone around me and be accepted but I could not make "small talk". I created conversations in my mind prior to any engagement with anyone and if I hadn't rehearsed I would be left mostly silent and after a few questions from the other person the conversation would end. Also, I've never (up until now in my life - a person I now call a friend who has been insistent on being my friend; she makes up about 90% of our engagement and conversation
) had friends that lasted; Someone would befriend me but I never kept in touch (the following reason is the best I can come up with as to why I've not been able to keep friends) because, again, that would involve small talk which is something I am still trying to master.
What I did during my adolescence was found an interest in words, spelling, memorizing and language and have utilized that to my advantage in conversation and speaking publicly (public speaking is something I quite fancy as long as afterwards I can go home and be away from everyone
; silence is sweet to me...I think deeper than anyone I've ever met).
As well, I have a deep fascination with the human in general but more specifically the brain, body, mind and our supernatural ability to heal ourselves and have also used this special interest to my advantage in many situations. I am extremely empathic (the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner.)and have a gift to feel so deeply what a person is feeling that I can tell exactly how to help them by reciting pages from literature I've memorized over the years (offering this 'help' to people who did not want the help left me depleted and mostly confused after taking on their feelings). I stopped using this gift so much when I became employed 5 years ago(Automotive Tire technician is what I became employed as; this job was a means for me to establish myself because I was homeless with 2 toddlers) I spent my days at work running and lifting heavyweight, engaging with customers and colleagues, LOUD automotive noises all day, answering phones, and performing administrative computer tasks between 8-12 hours per day 5-6 days per week. The way I was trained by my management was difficult for me to grasp so I started trying to find my strengths: I can mirror people in my environment so well that I can do what they do and then do it even better by including my special interest of big words and proper human engagement (eye contact, a firm handshake while making eye contact and smiling etc.[doing anything with joy in your heart makes you more appealing to an on looking eye]
);
I can memorize entire pieces of literature and verbatim recite them with eloquence so I don't sound so robotic( when I first began implementing this strength of memorizing and reciting I often got told I was robotic and the customer won't trust me if I sound robotic);
I watched the training videos from the company and I mirrored exactly what I saw and I coined my own phrase of being a "culture carrier" so that my colleagues then became my employees as I advanced into management and my customers came in and asked for Deedee(me) every single time because I made sure to do the job right the first time and made them feel like they were the most important person in those moments of conversation.
Over the last 5 years of my employment I was completely unaware that what I was doing my whole life and during employment is called "masking".
At work I was told that "all of management sacrificed their time before they got clocked in to train without being paid" so I did what they all did for 2 years until I got promoted to assistant manager I came in at 6:30 am and didn't clock in to get paid until 8-9:00am. Then once I was assistant manager it was exemplified to "clock out by your 5th hour as if you're going to take a lunch and because of the needs of the store keep working with no breaks and no lunch". When I was fresh in the company I questioned how ethical this all was because it was against the written policy of the company to which i received the response that if i couldn't abide by these unwritten rules then I might not be cut out for management. It confused me that my colleagues were all silently "sacrificing" their time to keep climbing the latter but if they were doing this then that was what I needed to do to be like them.
There were days (i had no idea what was happening at the time) that I was frozen with anxiety and tears would roll down my face and I would ask to leave (sometimes I would make up a reason in my mind and other times I just cried and knew I had to go home to be in the quiet by myself). These 'episodes' became more frequent and more debilitating.
In November 2022 I had my first syncope and collapse episode (temporary loss of consciousness caused by a fall in blood pressure.) the E.R. staff said it was from a deficiency called hypokalemia (deficiency of potassium in the bloodstream), dehydration and extreme stress. Since that I had 9 syncopal collapses up to January 1,2024. The last of which I had while in residential treatment for eating disorder.
On August 21,2023 I left work in an ambulance with my 7th syncopal collapse and since that day have been attempting to uncover the cause of all of this. I requested leave from work and it was granted but during this time have been suffering with an overwhelm of autistic symptoms (A.R.F.I.D., huge decline in executive functioning ability, stimming, lack of mental clarity, social isolation, communication issues that caused me to not make much sense when I talk or talking in circles, major depression, anxiety, gastrointestinal issues).
Because I am a female, I'm 35 and have always masked my symptoms exceptionally well I have never been diagnosed and now, after MUCH self education, it has taken me almost 1 year and an immense amount of decline to find out that I may be dealing with "autism burnout".
I live in Southern California, USA. This seems like more access to services would be available however I have found the complete opposite to be true. I personally have been the only one on my care teams (yes that teams is plural because over the last year I have been to multiple specialists and in residential and partial hospitalization as well as outpatient and not 1 person knows enough about autism to even refer me to the right person for a diagnosis). Also, insurance has ran me around in circles.
The interesting thing is that I read the National Autism website for the UK and compare it to the National Autism website for the USA and
my mind is blown that the UK is far more advanced in this field and the regulations and ACTS that have been passed requiring the General Practitioners (GP is equal to a Primary Doctor PD in the USA) to support adults with receiving a diagnosis for Autism.
I've read that it's possible to regain my ability to mask and to recover from "autism burnout". Is it possible to do it alone? I'm sincerely over here trying.
It appears that what is holding these doctors and insurance companies back from cultivating a complete support network for adults who have not been diagnosed is BUREAUCRACY (money).
I've said often over the last year that ANYONE who is autistic and less able to advocate for themselves than I am in my small degree would be left to suffer in silence!
Why is there even ONE human suffering in silence when there is help to be found and intelligence in the world enough to help these adults who may have been misdiagnosed or not diagnosed at all?
Who is willing to use their intelligence and education or experience to advance this research?
Hasn't every other human group that has rights been honored until this point? YES! So, why not Autistic adults in AMERICA and the WORLD!
Have you experienced or witness someone you know experience "autism burnout"?
Backstory: My name is DeeDee; I'm 35, female and level 1 Autistic(struggling to find someone who will perform an adult Autism diagnosis)with several co-occuring conditions.
I lived the majority of my life questioning if I was "normal"; I'm hyper sensitive to smells, touch, sound and tastes and I have a hyper awareness of myself and my surroundings: these and many other autistic traits I have resembled zero percent of my peers.
I struggled during school because my brain could not focus on all the different subjects at the same time. I am really good at some things but 6 different subjects in one day left me sitting silent in some classes wondering why I just couldn't get it and other classes I would almost annoy my class mates because of "always knowing the answer" or "always wanting to be the one to read". Most of my teachers saw me as a great pupil who did not goof around in class even when my brain could not grasp what was being taught (I sat at the front of the class if the seating was by choice).
I always (my entire life) wanted to appear like I fit in with everyone around me and be accepted but I could not make "small talk". I created conversations in my mind prior to any engagement with anyone and if I hadn't rehearsed I would be left mostly silent and after a few questions from the other person the conversation would end. Also, I've never (up until now in my life - a person I now call a friend who has been insistent on being my friend; she makes up about 90% of our engagement and conversation
) had friends that lasted; Someone would befriend me but I never kept in touch (the following reason is the best I can come up with as to why I've not been able to keep friends) because, again, that would involve small talk which is something I am still trying to master.What I did during my adolescence was found an interest in words, spelling, memorizing and language and have utilized that to my advantage in conversation and speaking publicly (public speaking is something I quite fancy as long as afterwards I can go home and be away from everyone
; silence is sweet to me...I think deeper than anyone I've ever met).As well, I have a deep fascination with the human in general but more specifically the brain, body, mind and our supernatural ability to heal ourselves and have also used this special interest to my advantage in many situations. I am extremely empathic (the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner.)and have a gift to feel so deeply what a person is feeling that I can tell exactly how to help them by reciting pages from literature I've memorized over the years (offering this 'help' to people who did not want the help left me depleted and mostly confused after taking on their feelings). I stopped using this gift so much when I became employed 5 years ago(Automotive Tire technician is what I became employed as; this job was a means for me to establish myself because I was homeless with 2 toddlers) I spent my days at work running and lifting heavyweight, engaging with customers and colleagues, LOUD automotive noises all day, answering phones, and performing administrative computer tasks between 8-12 hours per day 5-6 days per week. The way I was trained by my management was difficult for me to grasp so I started trying to find my strengths: I can mirror people in my environment so well that I can do what they do and then do it even better by including my special interest of big words and proper human engagement (eye contact, a firm handshake while making eye contact and smiling etc.[doing anything with joy in your heart makes you more appealing to an on looking eye]
);I can memorize entire pieces of literature and verbatim recite them with eloquence so I don't sound so robotic( when I first began implementing this strength of memorizing and reciting I often got told I was robotic and the customer won't trust me if I sound robotic);
I watched the training videos from the company and I mirrored exactly what I saw and I coined my own phrase of being a "culture carrier" so that my colleagues then became my employees as I advanced into management and my customers came in and asked for Deedee(me) every single time because I made sure to do the job right the first time and made them feel like they were the most important person in those moments of conversation.
Over the last 5 years of my employment I was completely unaware that what I was doing my whole life and during employment is called "masking".
At work I was told that "all of management sacrificed their time before they got clocked in to train without being paid" so I did what they all did for 2 years until I got promoted to assistant manager I came in at 6:30 am and didn't clock in to get paid until 8-9:00am. Then once I was assistant manager it was exemplified to "clock out by your 5th hour as if you're going to take a lunch and because of the needs of the store keep working with no breaks and no lunch". When I was fresh in the company I questioned how ethical this all was because it was against the written policy of the company to which i received the response that if i couldn't abide by these unwritten rules then I might not be cut out for management. It confused me that my colleagues were all silently "sacrificing" their time to keep climbing the latter but if they were doing this then that was what I needed to do to be like them.
There were days (i had no idea what was happening at the time) that I was frozen with anxiety and tears would roll down my face and I would ask to leave (sometimes I would make up a reason in my mind and other times I just cried and knew I had to go home to be in the quiet by myself). These 'episodes' became more frequent and more debilitating.
In November 2022 I had my first syncope and collapse episode (temporary loss of consciousness caused by a fall in blood pressure.) the E.R. staff said it was from a deficiency called hypokalemia (deficiency of potassium in the bloodstream), dehydration and extreme stress. Since that I had 9 syncopal collapses up to January 1,2024. The last of which I had while in residential treatment for eating disorder.
On August 21,2023 I left work in an ambulance with my 7th syncopal collapse and since that day have been attempting to uncover the cause of all of this. I requested leave from work and it was granted but during this time have been suffering with an overwhelm of autistic symptoms (A.R.F.I.D., huge decline in executive functioning ability, stimming, lack of mental clarity, social isolation, communication issues that caused me to not make much sense when I talk or talking in circles, major depression, anxiety, gastrointestinal issues).
Because I am a female, I'm 35 and have always masked my symptoms exceptionally well I have never been diagnosed and now, after MUCH self education, it has taken me almost 1 year and an immense amount of decline to find out that I may be dealing with "autism burnout".
I live in Southern California, USA. This seems like more access to services would be available however I have found the complete opposite to be true. I personally have been the only one on my care teams (yes that teams is plural because over the last year I have been to multiple specialists and in residential and partial hospitalization as well as outpatient and not 1 person knows enough about autism to even refer me to the right person for a diagnosis). Also, insurance has ran me around in circles.
The interesting thing is that I read the National Autism website for the UK and compare it to the National Autism website for the USA and
my mind is blown that the UK is far more advanced in this field and the regulations and ACTS that have been passed requiring the General Practitioners (GP is equal to a Primary Doctor PD in the USA) to support adults with receiving a diagnosis for Autism. I've read that it's possible to regain my ability to mask and to recover from "autism burnout". Is it possible to do it alone? I'm sincerely over here trying.
It appears that what is holding these doctors and insurance companies back from cultivating a complete support network for adults who have not been diagnosed is BUREAUCRACY (money).
I've said often over the last year that ANYONE who is autistic and less able to advocate for themselves than I am in my small degree would be left to suffer in silence!
Why is there even ONE human suffering in silence when there is help to be found and intelligence in the world enough to help these adults who may have been misdiagnosed or not diagnosed at all?
Who is willing to use their intelligence and education or experience to advance this research?
Hasn't every other human group that has rights been honored until this point? YES! So, why not Autistic adults in AMERICA and the WORLD!
Have you experienced or witness someone you know experience "autism burnout"?
. If it has been satisfying to walk away then more power to you. 
