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^^ above you guys mentioned something about afternoon brain fatigue of some sorts , while was in the nursing field . A noted feature of a number of older patients was something referred to as Sundowners syndrome.. characterized by faulty memory and a certain degree of foggyness depending on the patient. Have experienced this myself to a lesser degree , but have endeavoured to fight this version of what otherwise feels like a chronic fatigue type of thing. With multiple co-morbidities have cross studied this syndrome thing as it affected myself and did a close study of my late father- in law. While he was amongst the living . Passed at 93 yrs of age. made copious mental notes regarding supplements and hours of the day he was more alert than others , Done with his permission and his input as he was a Professor of Anesthetsia and a Doctor of Osteopathy .
it became one of those things you get consumed by when you have a intense interest .
it Was / is fun to study things that appear to have direct cause and effect , particularily in the lesser
known feild of NOOTROPICS . for what ever thats worth ..

feel welcome to join our little group ,All fees to join club are collected at time of Landing on this here W rong Planet . If you think of it , think good thoughts for our moderator B-19

she is recovering from a infection and very possibly going to go through a surgery in the near future.

Hello everyone! Thank you B12 for the two resources, welcome Mrs. Peel and Deanne.
Thank you for all the replies over the last few days as well as these super interesting links you shared.
This is so great that we are accumulating others in our community.

I can relate to pretty much everything that’s being shared and I’m actually dictating this on my iPad lying in bed because I’m too exhausted after work to invest in crafting a longer response today. The whole idea of AS exhaustion Is very fascinating to me.

My experience is that I’m on fire in the mornings and pretty much hit the wall by 3 PM. Although I’ve learned a lot, sought answers from experts, worked with many experts including physicians counsellors etc. it’s still hard to tease out the source of my mental fatigue. It seems to be getting more significant as I age. And to be clear, it’s not just fatigue. It’s accompanied with other issues including concentration, multi tasking, focus, word finding, etc.

In any event, the study that was shared provides an addition factor to explain this phenomenon in addition to the other factors that I identified play a role: Anxiety, depression, attention deficit, the demands of work, the additional demands of raising a family, on top of working so hard all day everyday to camouflage, behave and communicate appropriately.

This speaks to the reason I ultimately sought diagnosis - to better understand how all these pieces fit together and understand myself. I’ve needed to make sense of all of this in order to be kinder to myself, to understand my past, to understand who and why I am, and hopefully make better decisions for a healthier future that honors my strengths and weaknesses.

I am also reminded of the parenting journey raising a child on the spectrum trying to figure out how much his personality, behavior, ASD, mental illness, etc. plays in his behavior in any given scenario limitation. It’s like a very complex puzzle to navigate all the time with no clear answers, and most of us love clarity, black-and-white etc.

This is also very topical for me as I am currently paying attention to this fatigue and really examining it instead of pushing through it as I always do. I am a very determined hard-working responsible and committed person and I’m struggling with whether continuing to push myself as I always have to function at the level I do is the right thing to do or whether the toll it takes on me makes this approach really amounts to poor self esteem and self harm.

It makes me sad and angry that I feel the need to look externally for proof or reason in order to give myself permission to make changes to limit certain areas of my life or behaviour for self-care. I guess it’s hard to teach an old dog new tricks. After 50 years of pushing myself every day with everything I do to show up, work hard, and be the best I can be at home and at work.

I identified and am exploring this pattern or way of life with my therapist and it was shocking for me to realize that most people don’t have to do this. That it isn’t normal or healthy to have to push yourself every day from the moment you wake up until the moment you finally let yourself collapse into bed at night. It isn’t typical to have to work this hard to manage your brain and your behavior.

To expand on my experience, as soon as I regain consciousness in the morning upon waking up, my brain fires up its turbines and within less than an hour is roaring like a freight train throwing me thoughts and ideas and check lists etc. Manaing my brain while focussing on getting my morning routine completed (shower, hair, make up, jewelry, outfit, etc.) feels like a real achievement by the time I leave the house. And this is at a stage in my life where my children are old enough that I don’t have to manage a child every single morning (for years and years) who won’t eat, who takes 40 minutes of negotiating, tears, etc. to choose and put on a pair of socks he can tolerate, or if you don’t manage him will get sidetracked and you’ll find him sitting downstairs somewhere having done absolutely nothing for 20 minutes when you thought he was brushing his teeth or putting on his shoes. For those of you who are a parent of a child on the spectrum, you get it so I’ll move on.

I am now learning to realize and accept for the first time in my life that it legitimately is very taxing and challenging for me to get up, get going and get ready to leave my home and that it requires me to focus very hard to do this.

Contrasting this with my son’s experience, he was raised to understand that some of his experiences aren’t typical and to understand why. He was offered information and supports and strategies to cope. Even so, he struggled, he struggles. Yet he learned to also give himself a break, understand his limitations and honor them without shame or self loathing.

I’m just now learning to give myself a break, that it’s ok to give myself a break and to understand the limitations of my neurodiversity and try to honor them. These things are still very hard and it’s an ongoing journey trying to process the shame and self loathing.

To continue to share my daily experience with you all, by the time I’m at work my brain is on fire - smart, efficient, creative, etc and that feels good. That is the upside of my brain – that it’s so powerful when it’s working in my favor.

Depending on how much time I am required to spend with one to one or group meetings on any given day, I burn out by mid afternoon or so. It’s not unusual for me to have very little to nothing left by the end of my day for myself or my family. This sounds so grim but I’ve only recently, with the help of my therapist, identified that this is how I’ve lived my life. It’s shocking, sad and true.

And throughout, I have layered on top, self judgement for being so tired and feelings of failure compared to my colleagues who not only manage similar work seemingly more gracefully in addition to having energy and interest in the evening to do meal planning and cooking, engage in activities like fitness and hobbies, contribute to their children’s homework and activities, keep house, and entertain.

I’ve tried to keep up and push myself but even so I either can only manage to do a couple of them a week or I manage to push myself hard enough and eventually hit the wall and want to hide under my bed or sleep for a day during the weekend break.

The result is that many evenings I find myself in a place of low mood, feeling bad about myself and stuck in a loop of negative self talk for not being enough and not understanding why in some ways I can keep up and in other ways I can’t keep up.

I have always felt different. I have always known deep down I’m different. I found that the diagnosis was so affirming and liberating. I was affirmed that yes, I am different and that some of the aspects of my life that make me feel like such a failure and are so hard on me are explained by something other than weakness or failure.

It’s so wonderful having this channel to share these things with you all because here’s the thing. Very few people in my life, other than the few I have confided in about all this, would ever guess that this is how I feel or that this is my day to day experience. I am told that I come across as one of those of the people I described to you above. Those women that appear to do it all without a trace of all the struggle that’s going on inside.

I think one of the sources of this struggle in me is that it is tough when you know you’re intellectually capable of meeting the requirements of certain tasks roles or positions that you find interesting and challenging it doesn’t seem like an option to forgo these opportunities even if it is costing you so much, when there is no indication that anyone else struggles the way you do, you don’t understand why it’s costing you so much, so you conclude that you simply needs to press on and work harder and assume everyone else must be doing the same.

Parenting a son on the spectrum allowed me to realize the irony of the term “spectrum” in ASD because a “spectrum” implies a line with each end being an extreme opposite of something. I’ve learned that the neurodiversity of us on the spectrum is more like a sphere with many many different points on the surface, each representing a features or function area, and each one also lying somewhere on it’s own mini-spectrum. Every person on the spectrum presents so differently . Like they say if you know someone on the spectrum you know one person on the spectrum.

My son is a great example. He’s super academic, quick executive function, strong verbally but he has a couple very narrow areas of relatively low functioning in social and emotional areas. So it’s always been tough for him to be so capable in so many areas while at the same time struggle so much and experience so many failures in other areas. His disability is invisible and it’s caused years of misunderstanding and judgement from teachers, other parents and peers. These groups don’t understand that his social struggles or negative behaviors are often beyond his control and instead judge him, take offense, or reject him.

I don’t know whether it’s because my ASD presents so differently on the sphere, or partially or largely because I’m female, but I’ve always been motivated to push myself to avoid these judgements and consequences and maybe that a big factor how I’ve arrived in a place that I accept having to push myself all day long without question.

Wow – I just wrote a lot. I better get going. The sun is setting and I’d like to read my novel before I fall asleep..

we haven't talked about the pandemic or the BLM protests etc. but I have had to limit my media and social media since March to a couple times a day as it's too exhausting. I've found that reading fiction is actually relaxing and doesn't feel as exhausting at the end of the day as it usually does. Interesting. I'm not going to attempt to make sense of any of that - lol.

I hope that our connections are helping you as much as they are helping me. I welcome and value our little growing group!
My plan is to check in with you all once or twice a week so if I don't respond right away it's because i'm re-energizing ;^)

^^^^^ thank you for posting about the theory of spoons ^^^^^ had heard of it just not read about in a clear and concise manner ..had this been read in the afternoon might not have grasp it as well.
having to see a doctor daily lately , sometimes even 2 appts in the same day . understand about tthe days of having a deficit of spoons quite often . am just amazed somedays , i get through with the help of alittle caffiene . ( not advised) sometimes those days am so outta spoons that hard to even rest to get sleep. Conversely the caffiene occassionally as it wears of still have enough of a spoon to get to sleep. hot baths at night can give back a small teaspoon towards rest.
..

I used to experience afternoon fatigue and would have a hard time staying awake after lunch. I stopped eating/drinking any form of added sweeteners, either natural or artificial, and after a couple of months, this problem went away. It's probably not for everyone, but even though I used to be a sugar junkie, it wasn't very hard for me to give it up.

hi everyone.
i've been swamped at work and haven't had a chance to check in with you all. since last time I posted i've connected wiht a few other women who might be interested in connecting. I'm not sure how to use forums in general or this one in particular. what's the easiest way to invite someone to contribute? is there a link to share?

Did i share before? https://felicity-house.org/ so fantastic!
https://felicity-house.org/our-programs/

ttys,

I had never heard of Felicity House. I looked over the website but....it looks like it is run by people who are not autistic. It rubs me wrong...have our staff reach out to you...?

When I first ran into The site , it did not “ask for the staff to reach out to you” back then .
Have not recently explored their site for over a year, but previously , They offered nothing online except to write little blurbs. About their interactions At their actual location was the impression I got . Now am seeing this new website.
Appearing more inviting to a online crowd . TY. Btw , cause I haven’t visited to site for a long time . Had been receiving a monthly newsletter. But. Gave no indication about their online community presence .

Had a brief dialog With someone there , ongoing for a few weeks after , I believe I had made a donation to them .
They did sound like they were a great support to the community there in NewYork , for People whom arrived in real life .
Inspite of there “ staff reaching out to you” thing , maybe influenced by. Supporters of the the felicity house.
(Supporters also being , perhaps N T parentS or associated persons).
If they are managing to hold onto any property based in NewYork . Which is traditionally a high rent area,
I. Might think that they are legitimate entity ?

I think they are legit and well-meaning. I just don’t like being treated as “other.”

I've just been diagnosed with ASD at age 45.

I'm also on a waiting list for ADHD assessment, and I have Type 1 Diabetes.

I've been given a long list of organisations and links to work through, but it's all a bit intimidating.

I have lots of books to read, too, but getting the information to stick in my head isn't easy, and involves a lot of effort.

Sometime ago , I heard the phrase about beggars not being choosers when your outta. Spoons ... you sometimes all you can do is sit and try to type responses to WP. As a mental distraction for yourself . Rather than focus on how serious. Your fatique is .

Funny how everybody give you sources for help. Have asked people for help , (med professionals)
And best I get is blank stares mostly .guess ASD. Peeps in my area that have been ptsd-Ed. Outta there ability to keep up, don’t count . (But your mileage may vary.)

I am 56 and got my diagnosis about ten years ago I think although I realised I was autistic when I was about thirty when I came across the book Women from another Planet. The diagnosis was no help what so ever and in fact caused a lot of problems in the family as suddenly everything became my fault. My sister was delighted as it helped her deny all her problems and my Dad acted as if I was no longer worth trying to communicate with while my mother tried to take control over my life by applying for benefits for me despite the fact I was working. They are all on the spectrum too, to varying degrees. My mother is the most severely affected of us except for my eldest son who lives in a residential facility because of his severely challenging behaviours and severe learning difficulties.

I have been struggling with fatigue for years which has become really bad lately. I too only have a few hours in the morning when I can function properly and then only if I stick to a very strict diet. If I eat the wrong things each thought feels as if it is pushing through treacle. It is less brain fog than brain clog. I have eliminated all processed food and sugars but still have trouble. My memory is fine although it needs to be triggered but everything is such terribly hard work. The reason routine is so important is that one can reuse that mental effort and then just tweak it around the edges rather than having to reinvent the wheel everytime something needs to be done. My family just don't understand this. My sister in particular is chaos on legs. She sees any routine as an attack on her personal freedom. She never puts anything away but leaves bags of groceries lying about on the floor complete with rotting vegetables as if cupboards are complicated bits of technology that her brain doesn't understand, just as she doesn't understand computers, or tv remote controls, or bus time tables. She piles washing up into the bowl and leaves it to soak for days and gets upset when I object. She learned that trick from my mother. They both seem to like having the sink full of fetid slime at all times. When I wash up I clean the entire kitchen leaving all the counters clean and clear with everything put away but apparently this is controlling and mean spirited. So basically we can't share a kitchen. I started using another room that had a sink instead and made it nice and decorated it but then my mother decided it was so nice that she wanted that room as as an extra sitting room. Fair enough, it is her house after all. So I started cooking and washing up in the garage. But then they started complaining about me going in and out of the house, opening and shutting the door. So I moved into a shed in the garden. It is lovely. My own little kitchen and no nocturnal family members waking me up all night long. I have made it really nice and insulated it really well. I have an extension cable to run my hot plate and microwave and the heaters in the winter. I only go into the house first thing in the morning before they get up to use the bathroom and washing machine. The rest of the time I pee in a bucket. They made it clear they don't want anything from me. Apparently even my giving my mother cups of tea in bed is an attempt at controlling her and keeping her from recovering from her stroke. The only thing they want to talk to me about is religion and the years of defending myself against their agressive evangelism have meant that I am likely to descend straight to meltdown when they start. I hate being driven to that so it is safer not to talk them at all. I don't want to be the person who shouts at an old woman. It isn't that I don't want to talk to them it simply isn't safe and always ends in a row. Everything that comes out of my sister's mouth is manipulative, designed to push one of her agendas, whether it is Christianity as the superior religion or veganism or fruit trees or the latest food supplement or exercise that shows how caring and wonderful she is, which she has to prove because she believes the devil follows her around turning lights on and off and changing peoples faces and speaking through them. She only values Christianity as a shield against the devil so actually what she is evangelising is belief in the devil which isn't going to do anyone any good. And she takes anything I say in the most negative way she can. If I say she plays her guitar beautifully, which she does, she takes it as saying that her voice is dreadful. Her voice is beautiful too, but because I didn't expressly say that it was a way to deflect the guitar complement and to keep up her position that I am against her which she has to believe in order to justify the way she treats me. Because anyone who isn't a Christian must be evil...

My executive functioning is appalling. I can't manage the simplest things. I can't make phone calls or leave the garden (I can't say house because I have panic attacks about entering the house most days!) I managed to go and see the doctor last year because I was feeling so bad and managed to get myself stable enough to face it but it got sidetracked into talking mainly about my asthma. I did have a heart test done because of the palpitations and chest pain I was getting after exertion but he still didn't have the results a month after the test and they didn't have the schedule ready to give me another appointment so that was that, by then the mess with the family had wrsened and I was living in the shed and wasn't confident enough to leave the garden to walk up there to boom another one. Then the pandemic arrived and you can't book appointments by any means other than phone so that is me without health care. I have work although I get paid peanuts for it. I have to pace myself carefully in order to get it all done but since I have few living costs the small amount I get suffices.

I know several other older women on the spectrum. Maybe they are the only ones who don't find me so strange that they need to avoid me. The older I get the more aware I become of how different I am. When I was younger I assumed I could do whatever anyone else could do. This served me well in the academic sphere (I have a degree in Maths with physics) but socially it was a disaster. One dramatic disaster after another:( I have completely failed as a mother. I married a train wreck of a man and took far to long to divorce him and made a complete hash of being a single parent. I drove myself too hard and then burned out quite spectacularly but as no one was paying any attention even that didn't get me any help although my eldest son did end up with a wonderful placement so at least he is ok. My middle son has always been acutely embarassed by me and doesn't even want me to meet his girlfriend. My youngest hardly ever comes out of his bedroom and doesn't want to listen to anything constructive and won't ask anyone else for help either. He went to university but couldn't cope and got no support and the antidepressants the doctor prescribed made him stop caring so he dropped out. He had his allotted 12 sessions of therapy so all that he is now offered is a list of places he could call for help if he didn't have a problem and was able to. And of course the pandemic has made his wanting to leave his room even less likely. He has no income as the very mention of claiming benefits makes him clam up. I buy his food and my mother pays the household bills. The guilt of not being able to solve his problems is enormous. My middle son blames me for that too but he was actually doing really well and had lost fifty pounds and was exercising and feeling better until middle son came home for a month last year after breaking up with his previous girlfriend and shouted at him and knocked him over and knelt on him and sent him tumbling back down into depression. Middle son also threatened to have me committed and picked me up and threw me on the floor because I was arguing with my sister because she had been telling him her version of me. He has his father's temper and probably ADHD but he is the most functional of us!

In some ways I am very competent but in the ways that count in society I am hopeless. I have no idea how to extract myself from the situation I am in and anyway don't have the energy to carry through a plan even if I could come up with one. Life has too many variables. I can cope with the present but not the future. I need boundary conditions to solve the equation of life and there are too many boundaries. And my head is full of treacle and actually hurts most of the time. I am hypersensitive to noise and while my garden is a lovely oasis of green it sounds as if it is located on a construction site next to a motorway. The lull in noise during lockdown - only a lull it was never actually quiet, it was busier here than in any city on the planet I think - has only served to make the return to normal feel like torture. I have always been careful not to think about the noise knowing the more attention you pay to anything painful the more it hurts but my defences have slipped and it is really really bothering me. I even shouted at the neighbour with the unmuffled motorbike yesterday after he spent hours just revving the sodding thing. So yet another neighbour will hate me:( I am paranoid enough about the neighbours already, knowing they could report me for living in the shed if I let light show or make any noise out here at night. I don't want to be homeless. I like my cosy shed and the fences that keep other people away. I couldn't cope with moving and being properly homeless having to carry everything around sounds exhausting. If I had more energy I could manage, maybe, but I don't.

As I get older I realise that I am not who I thought I was when I was younger. I used to think that being clever was enough, that of course I could do what other people do. But experience has taught me that I can't. Effort isn't enough. And I put far more effort into things than others do. I used to think I was lazy and felt tremendous guilt over it. But I am not. My workarounds usually require more effort than the straight forward way other people do things but they are necessary to get around the many obstacles in my path. Once I start something I will work until I all too literally collapse. I work and I sleep. For recreation I learn languages although lately the brain clog is making that more difficult. It hurts to try and push more in. Literally hurts. Normally I love duolingo because it allows me to reach flow and is very calming but lately it hurts. Similarly reading subtitles hurts, or reading anything actually. My latest theory is that it is the return of the air pollution that is causing the headaches. I had a remarkably headache free time during lockdown. My asthma went away too so it can't just have been the noise.

I always wished the women's section here could be a bit more serious than just about make up or hair or periods. We women are far more likely to have things in common than with the men in the general area. I have no more in common with a man on the spectrum than with a woman who isn't on it. I know not all women on the spectrum are the same, but the shared things are things we don't share with anyone else. And we will understand when communicating is too intense and there need to be gaps. I usually get incredibly embarrassed about what I post but I also need an outlet sometimes. I probably overshare in bursts when I normally share nothing. Apologies if it is too much but you don't have to read it and I certainly don't expect you to solve it. I don't need people telling me what I ought to do. I know what I ought to do and I also know what I can do and I know how to look for the days when more is possible and take advantage of them to extend that. My difficulties are real, I need a place where I don't need to justify them and I am sure others of you do too.

hope you are able to keep yourself up , it sounds very difficult .my heart goes out to you .
it is good that you are aware of your own limitations .