Burnout and the consequences of recovery

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13 Jan 2022, 5:16 pm

cabowm02 wrote:
Im 35
I was diagnosed with Autism level 2 in May 2019. Lost my apartment and car I had paid off and it’s been a nightmare ever since.

Did the Level II aspect of your diagnosis seem to affect you badly, or was that expected ahead of the actual report, in your case? The stories of others who have been given a Level II diagnosis make me worry about whether this is something I need to "steel" myself against, ahead of time, lest I fall into a trap of thinking "Not only was I ignorant of the fact that I'm on the spectrum, I had no idea how deep into it I am, therefore what hope do I have to come to an adequate understanding of how I need to change my life to better accommodate my deficits.".

cabowm02 wrote:
I live in Louisville , Kentucky

I have a relative that lives there. What about that city seems most egregious to you? I've visited a couple of times, but have no idea what it would be like to live there in the very difficult circumstances that you describe. I'm assuming that your experiences with culturally-based dismissive attitudes towards your situation are the primary reason you take such a dim view of the city?

cabowm02 wrote:
When my disability was denied the person on web cam that did the evaluation said “you have pretty eyes”

Ugh. I fully understand the need to do evaluations before granting or renewing disability support. But the process is SO fraught with the limitations of time, money and training of the people that work in the system. The idea that just one person having a bad day, or making a superficial observation like that, and unconsciously letting it cloud their objective view is greatly disheartening.

cabowm02 wrote:
Like I’ve definitely learned, if you tell someone you have autism, they will mock you, be curious, think about your diagnosis like they are re diagnosing you themselves and convince themselves basically that you don’t have autism if you can respond with a sentence.

I've been amazed at how little blowback I've been exposed to thus far. How this will play out in the future remains an open question. I think I have the advantage of creating a very "striking" perception in others, and have often encountered the idea that others just couldn't quite "put their finger on" what was up with me. I'm hoping that in the cases where I'd be willing to disclose an ASD diagnosis, that the sort of people that I'd feel safe telling have reached (or could reach) an adequate level of understanding about the many ways that ASD presents. I expect that for some, once an adequate understanding of ASD is reached, they will have an "Oh, of course!" moment when thinking about their interactions with me.

I'll certainly limit who I disclose to, locally, given the conservative nature of the culture of a town of 200 in the high desert of Nevada. The problem there is, of course, that "loose lips sink ships", so it seems inevitable that word will get around about that one 6'6" weirdo that rides a tiny electric scooter around in a town full of giant diesel pickup trucks.

cabowm02 wrote:
Option now is jail, homeless shelter or under the bridge and I really hate Kentucky and the city of Louisville.

Are you homeless right now, then?
Are there any members near Lousiville that have any local-specific advice?

cabowm02 wrote:
I don’t think I’m going to be alive much longer so wish me luck.

You'll need much more than luck! If you can, please contact whatever local services you can find, even if they've proven unhelpful in the past. Personnel change in such agencies, and you may find an angel this time, rather than a disinterested drone. If all else fails, do you have any family or friends anywhere that you can "hole up" with, at least short-term?

I don't think I'd last long if I end up in circumstances like yours. The fact that you've been able to hang on thus far seems like a very positive indication that you can get through this, if only you can get a little help.

Darron


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13 Jan 2022, 5:20 pm

Benjamin the Donkey wrote:
I can easily imagine the terrifying possiblity of being utterly without income as the single parent of 2 young teenagers (which is itself a huge source of stress).

I am amazed by anyone who can achieve the (to me) impossibly daunting task of raising children.

Good on ya!

Darron


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13 Jan 2022, 5:36 pm

I think I have 'Delayed sleep phase disorder.' That's about as close as I come to 'burnout. I'm still not clear on what that term means exactly, other than total exhaustion and malaise. But I'm sure if i live long enough, And my life takes a terrible downward spiral into extreme adversity, i might experience it.


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13 Jan 2022, 5:38 pm

Burnout is one of those things which one does not realize how much it can effect you. It scared me and two and a half years on I am not right yet. My balance is not right. The grip in my hands... Feels like I have strained both hands so I don't have the strength and I used to have very strong large hands as I used to regularly put bicycle tyres on wheel rims many times a day. The last time I did it my Mum had to do it for me. Embarissing! And little things stress me that did not before, and I can take many months to make a decision and small silly things to decide stump me! The thought process of how to do things no longer comes naturally.
Burnouts... The last one almost left me dissabled as I stood in a carpark where I last worked and I had forgotton how to walk! I was standing there like a lemon (Why do people say lemons. They don't stand up?) not knowing how to walk. I had to wait until I saw someone walk to study how they do it so I could re-learn how to walk. Stupid things!
Yet try to explain these things to a doctor. I have never been able to. In about four months it will be 3 years of waiting to be assessed and two and a half years since the last major burnout.

As every burnout I had was worse then the one before and each time I could not work or even claim sickness (Apart from the last burnout) because I did not know what they were called and could not talk about them to anyone as I did not know how to describe them or what they were.

And each burnout took a few years to recover from so I was without income as I was not up to working. I had to quit jobs... Had to sell my house for half its market value and payed off the mortgage and was lucky enough to actually break even all expenses paid into it though I had a few thousand back to keep me going for a year... I had to live quite a few years on nothing and I could not claim benefits because I could not work... So I was trapped! I lost house, excellent job, I think I lost my pension and may have even lost state pension, have lost classic car and camper both of which I had to sell off at next to nothing compared with what I paid for them.
But burnout changes ones whole life. I was once doing ok for myself. I was able to support myself and then some. I cant even think of a way to even survive as I am concerned because the benefits people have called me in and I may have to give up claiming because I want to avoid the stress of it... They want me to get ready to look for work when I am not ready... But I am trapped! The assessment is a long wanting list and because I have not been assessed, I will need to look for work, and I am soo fragile I am very concerned that another burnout will leave me permanently dissabled. At least I can walk. I can drive. I get times where I cant walk far or not at all.



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13 Jan 2022, 7:14 pm

cabowm02 wrote:
Im 35
I was diagnosed with Autism level 2 in May 2019. Lost my apartment and car I had paid off and it’s been a nightmare ever since.

I live in Louisville , Kentucky
When my disability was denied the person on web cam that did the evaluation said “you have pretty eyes”

I have a head injury from when I was 3. I can only raise one eyebrow, one eye twitches , one eyebrow can’t produce sweat.

It’s been really scary having private landlords in backwards Louisville , Kentucky .

Like I’ve definitely learned, if you tell someone you have autism, they will mock you, be curious, think about your diagnosis like they are re diagnosing you themselves and convince themselves basically that you don’t have autism if you can respond with a sentence.

I struggle a lot . I was able to keep a health insurance job working remotely but landlord threatened my life and showed up without notice when I was living in a ghetto apartment on the west end of Louisville. I am smart , but I have all the difficulties you can think of with autism and for me to do social interaction is a lot of work.

1 on 1 , I can do a lot easier. Because well I’m talking usually , but my only
Option now is jail, homeless shelter or under the bridge and I really hate Kentucky and the city of Louisville .

Currently I’m too scared to even apply for food stamps and I’ve lost most of my belongings from people that don’t want to ever drive and give them back to me. I’ve lost everything except some old clothes I got in bags .

Wish me luck because I have an infection in my gums from a surgery I knew about since 16 and finally got it.

Nobody cares in this backwards state of Kentucky if you’re an adult with autism. They just want to mock you and challenge you and laugh.

I don’t think I’m going to be alive much longer so wish me luck.


I work in Florida with people who have developmental disabilities. If you are talking about Social Security disability, they have a policy of denying the first request for disability. You have to apply 2-3 times before they will give it to you. Not much help now, I realize. But just keep re-applying.

The other thing you have to keep in mind is applying for the correct kind of social security. They likely won’t tell you if your denial is because you’ve applied for the wrong type. And they won’t tell you what the right type is for your situation.

Social Security is a federal program. So it is the same in KY as it is in FL.

Kentucky also has a program to provide help. See here: https://dbhdid.ky.gov/ddid/scl.aspx
There is a wait list…again, not helpful now, but get on the wait list. Autism doesn’t go away over the life span.

Homeless shelters usually provide access to programs to help people. You might get help there.

I’m sorry you are in such a terrible position now. I wish I knew more of what might help you.


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13 Jan 2022, 7:24 pm

GadgetGuru wrote:
Can you explain what systemizing means, to you? I'm seeing the definition online of:

"Talent in autism comes in many forms, but a common characteristic is that the individual becomes an expert in recognizing repeating patterns in stimuli. We call this systemizing, defined as the drive to analyze or construct systems. These might be any kind of system. What defines a system is that it follows rules, and when we systemize we are trying to identify the rules that govern the system, in order to predict how that system will behave."

But I've found specific real-life examples to be much more useful to my understanding of aspects of autism than clinical language.

Darron


I probably misused the term but it was just processing the season and all it's events. I "needed" to search for the truth and go thru the memories and determine my reaction. I filed an harassment complaint and provided the information to the sheriff's office.



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13 Jan 2022, 9:01 pm

GadgetGuru wrote:
Jakki wrote:
in 2007 my husband was murdered by my younger brother.

What a shocking and horrifying story! Being able to live through something like that must be considered a "superpower", in my opinion.

Darron


Thank you ...spent 13 yrs wishing i hadnt . like to think i am now much more functional in the last
year . It was a twist of fate that i did not join him that night on my end. The aspie brain , i think can be bent into strange patterns under extreme circumstances. the story on my end became
very strange very quickly on my end.Like shock therapy to the mind in the hour afterwards.
had enough presence of mind to tryy to call my psychologist , no luck, talked to her secretary.
20 mins later local police were detaining me in handcuffs outside my door, 1800 miles away from the crime, 6 officers claiming i killed my husband in this house and searching it. just after hearing from coroners office hour earlier.Still cannot process that part. All of it had to be stuffed.


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13 Jan 2022, 9:19 pm

Yeah, horrific. That's a life changing event. That will effect a person for the rest of their lives.


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14 Jan 2022, 5:51 am

GadgetGuru wrote:
TimS1980 wrote:
Unfortunately my need for recovery and accommodation is still denied and gas-lit.

I'm terrified that what burnout recovery "looks" like from another's perspective is completely indistinguishable from malingering. Why should anyone who has not lived through it believe that what is being described is a genuine inability to be more than minimally functional. And worse yet, how and for how long a recovery must proceed doesn't seem very predictable (yet), especially when compared to what triggered it (if that is even known, at the time!).

"Last time, you popped right back into gear in a day, this time it's been WEEKS!" (or, in my case, as long as 5 months).

And worse, I've noted that when I am able to be "spurred" into action, this will often lead to further damage, if it's too soon. I've at times welcomed being spurred into doing something simple, like taking a walk, but "if I can do that, why can't I do X?"

Who am I to even ask for, much less demand such accommodation? No one owes me a life such as I imagine may be necessary for me to not end up as yet another sad statistic.


Yes, we struggle with this, though there is also a minority who take it in the other direction. Generally, we push ourselves beyond the point of burn-out and decreasing returns. I've come to understand this as a quest for middle ground, where we and those around us can agree and abide by sustainable expectations. This supports our best contribution back to those around us.

GadgetGuru wrote:
TimS1980 wrote:
It's a long road from where you are now, accept small wins and gradual progress. If you're lucky, you might ask for some kind of accommodation and assistance from those around you, based on the knowledge in this video.

My greatest fear is that there is no way for me to communicate this to the one who is most important, and closest to me. I can't say that I've "laid this all out" yet to the person in question, but I'm nearly certain that based on experience, my explanations, however impassioned and thought-through will be met with a reaction somewhere between thinly veiled contempt and outright disaster.

I have a strong inner desire to run far, far away. But to where, I can't say. Based on experience, even a brief "bolt" will lead to a whole new layer of strife.

I dunno, anyone have upcoming winning lottery numbers in their head?
I don't know if even that ridiculous fantasy could lead to a way to fully support myself. Just having a huge pile of money is not the only consideration of being able to cope with what I'm just starting to figure out about how I must live to avoid further disasters. I am now certain that I have cravings for deep personal connections, but also a need to achieve such connections in a way that will likely be very difficult for even the most accomodating and understanding people.

Had anyone here gone through such added anxiety in the period right before your official diagnosis was delivered to you? I have enough money to buy a plane ticket, though to where is an open question. And I'd have to hope my ancient crappy truck would run long enough to carry me the 185 miles from here in the boonies to the airport in Reno.


My wife didn't attend counselling after I was diagnosed - she didn't learn about what it's really like to be me, didn't learn to recognize the ableism in the sparse understandings she does have.

I had to stabilize the situation and go to work on myself, becoming ready and able to DIVORCE her if we couldn't reach a sustainable mutual accommodation. Ableists still have a lot of pathologizing research (not to mention the bloody DSM-5 definition itself) to point at when justifying their beliefs. This is changing, boosted along with the recently increasing activism for participatory research, but still too slowly.. I feel prescient, depressingly so, when I compare the understanding I've achieved with that of many of the people surrounding me..

GadgetGuru wrote:
TimS1980 wrote:
We autistics need to double down on efforts for social justice. I'm questioning whether I might be able to bend my career in that direction.

Do you have any initial thoughts on how you might be able to assist in this effort to spread awareness?

Darron


Personally, well, I have a family to provide for and a wife who would take a very dim view of my taking a pay cut to pursue this. The best interests of my kids do drive a lot of my decision making away from personal benefit and towards their benefit, which currently (I feel) includes growing up in an intact family unit.

This places me in the unfortunate position of pursuing this special interest to such a degree where I'm re-making my brain away from what's needed for my IT day job, and preparing me to be something like an executive officer of a social justice organization, or a researcher, or an active member in an advocacy / policymaking organization like ASAN.

I'll have to decide whether to pull back and keep getting paid IT bucks, or move into something aligned with my current passion. It's tough, and more so when I keep getting days when tying my shoelaces would seem like climbing a mountain. (Luckily I eliminated shoelaces years ago, skechers gowalk for life!)



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14 Jan 2022, 12:50 pm

HOORAY for eliminating shoelaces......! :D


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05 Apr 2022, 12:24 pm

Actress with autism opens up about ‘autism burnout’

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Sue Ann Pien is getting rave reviews for her portrayal of her character, Violet in a new Amazon Prime video series called “As We See It,” which follows the coming-of-age story of three 20-something roommates on the autism spectrum.

Pien has autism herself and knows exactly what her character is going through.

“I’m expending infinite amounts of energy just to be able to pass as normal,” said Pien.

Dr. Scott McLeod is the Executive Director of Aspire at Mass General and a Clinical Instructor in Psychology at Harvard Medical School. Heather asked him what can families and communities do to support individuals with autism and try to prevent burnout.

“Autism can be thought of as a disorder of prediction and the world is fairly unpredictable for many of us, but particularly those on the spectrum, and if we can make a student’s day or an employees’ day more predictable, it’s likely to help them with their anxiety,” explained Dr. McLeod.

Pien says what also helped her, was finding her “tribe” on a Hollywood movie set. She hopes others can do the sam


Understanding Autism Burnout. Ms. Pien is a guest in this hour long presentation


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05 Apr 2022, 1:15 pm

Oh the irony of having an hour long presentation on exhaustion!
:lol: :lol: :lol:
But, hey, at least things on YouTube can be paused and resumed later.

ASPartOfMe wrote:
Understanding Autism Burnout. Ms. Pien is a guest in this hour long presentation


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