Diary of an ASD Squirrel. Day 214 , Wednesday 29/05/2024
Up a little later today as Mrs S. was working from home.
Still fighting the agoraphobia , sometimes I wish I didn’t live so very far from my family, they would come round & drag me out.
But they live nearly 100 miles away & have their own lives.
Spent the morning totally indecisive about what to do.
Made some egg sandwiches for me n Mrs S. for lunch , then , as per had to clear up & wash the dishes too.
Ended up reading for a couple of hours then hit Fo4 after lunch.
Went wild & forsook the soup option for tea, in favour of spaghetti hoops with a couple of slices of toast - I really need to break out of the house so I can get some real food !
Final Thoughts.
Stupid brain going nuts about going outside !
I need to get myself out of this current episode , it’s not as bad as some I’ve had , but it is doing my tree in!
Thank you to all those who are helping me on this journey, in a myriad different ways. I am thankful to each & every one of you! 🫂 🫶🐿️🖖
Diary of an ASD Squirrel. Day 213 , Tuesday 28/05/2024
Up at 6m as Mrs S. was back in work today.
Another day of fighting the agoraphobia & losing . The spectre of the world beyond the front door playing havoc with my mind.
Watching others sally forth, both in analog & digital life makes me realise how far I have to go to get better.
I would go to the GP, but the whole thing over the ADHD assessment has badly shaken my trust in them.
Also I am so very aware of the state of the NHS & I feel that I cannot deny other, more worthy souls their opportunity to get medical help.
So chores are done and now I roam the countryside around Boston in the virtual world of Fo4.
I was analysing my current play style & I am being so very logical about it - for no reason. I need to relax & play the game as I encounter it, instead of maximising companion potential or trying to do stuff in a set order.
Got a new stand for the iPad today , gotta get used to the new layout - it’s more comfortable if a little odd at the moment.
Final Thoughts.
Sometimes my autistic nature makes me miss communication cues. I fail to respond in the way folk expect , sometimes say things innocently that are misinterpreted because there are certain rules that I either don’t know or don’t understand.
I am kind by nature & like to see the best in people, I like to compliment folk, often the old adage ‘it’s nice to be nice’ comes into play.
Sometimes I do not recognise the unseen, unspoken edges of what is acceptable, people have blocked me before today for being too familiar too soon.This upsets me a great deal when it happens. Thankfully it has not happened since I got my diagnosis.
Now I know I am autistic I take steps to try & avoid the more obvious pit falls , but sometimes I forget or get a little over enthusiastic & folk bring me up short. Then I back away & something is lost.
I had hoped that my GP would help me find the help I need but they seem disinterested. For now I am on my own.
Thank you to all those who are helping me on this journey, in a myriad different ways. I am thankful to each & every one of you! 🫂 🫶🐿️🖖
@actuallyautistic
Do not complain. If you never lived on the street for a while, if you weren't admitted to a psychiatric hospital for a while. If you didn't spend some years living in boarding houses, eating little and badly. If you didn't have a year of your life that you barely remember what happened or what you did and you ate every 3 or 4 days. If you didn't spend 6 or 7 long hours suffering from extreme anxiety attacks before going to the hospital to get an injection. If you didn't spend years of your life without sleeping more than 3 hours a day. If you did not experience dangerous situations because you got involved in affairs and jobs without thinking about the risks. If you didn't travel to other countries in a precarious way because you didn't realize it was dangerous.
That's all part of being bipolar, autistic, and gifted without knowing it, without having a diagnosis for many years of your life. It is part of having tried to be what one cannot be and not being what by nature one cannot help being.
All of these things and many more that I don't like to tell are part of this neurodivergent inner world that gave me a deep major depression when I couldn't take it anymore and from which it took me almost 10 years to recover. Although I can't really talk about recovery because the person I was before that has already died and what I can be now remains.
It's not fun to live like this, it's not funny, cool or an adventure. It's a complete shit life. The only thing that sustained me was that as compensation, nature granted me a high intellectual capacity and great resilience, without which I would not have survived even early childhood.
The wisdom that one accumulates by learning from suffering goes hand in hand with the need for solitude and silence and is the mother of low sociability and a strong awareness of the absurdity of life in general and human life in particular.
Don't get caught up in the alienation that rages in the world. My plans for my future years are to move further and further away from social life. And once I can retire, dedicate myself to what I like for the rest of the trip.
If the world and its herds run in one direction, go the opposite way.
"It might not feel like it's an active step toward self-acceptance or authenticity, but coming to understand yourself as disabled is a pretty dramatic reframing of your life."
Devon Price in Unmasking Autism
This sentence hits me hard. Haven't thought it using that wording. My internalized ableism screams. "I'm not disabled!" But I am. I need to digest this.
[alt-text: the words "what is ableism?" on a brown wood board background with an autistic pride flag to the right, with the autistic infinity symbol on it]
anyways, I had some trouble with the high end on this one, do yall have any advice for how I can deal with that? I'm still learning how to record well D:
@theautisticcoach@actuallyautistic When I was a kid (at least suspected of being #ActuallyAutistic -- in the 1980s when "actually autistic" meant "irrevocably broken", but that's a rant for another day), I had a grand total of one aspect of my neurodivergence that could plausibly have been called a "superpower". That was an ability to remember large amounts of factually related and connected information, and draw on it very quickly. Most of the rest of my #ActuallyAutistic characteristics were (and are) more kryptonite than superpower, at least in a society that isn't very accommodating to them.
This one "superpower" saved my ass all the time in school, and made most intellectual work through about a bachelor's degree a lot easier. But even that came with a few serious tradeoffs: lots of transactional, "hey can you help me with this?" sorts of relationships, people using this one skill to disregard area of my life where I needed support, and ending up in trouble in lines of work where this skill was important, but not the only thing that was necessary.
This self-discovery journey has been mostly satisfying. However, sometimes one is not really sure what to think. Overcompensating in order not to appear selfish is to be very helpful. I've thought this is an important part about me. I like to help. Now I read that this might actually be a way of masking. I guess the important part is not to OVERcompensate. And to think about my wellbeing first. Ah well.
I love Unmasking Autism. I've now read almost the first half and there's this constant flow of "that's me!", "oh!" and "wtf?!" from my part.
Part about learning certain characteristics being unwanted and masking by overcompensating for them was especially revealing. Things that really resonated:
"Pretending I didn't know the answers to questions" and "Keeping silent when people said things that weren't true" in order not to appear arrogant.
"Solving problems by myself" and "Not getting 'too excited' about anything, including good things" in order not to appear annoying and loud.
"Nodding or laughing, even when I have no idea what's going on" in order not to appear clueless and pathetic.
"Not voicing my needs" in order not to appear sensitive.
I'm in this picture and I don't like it... It's not that I recognize ever being certain things but I recognize overcompensating.
For what sort of toots could I use hashtags like #ActuallyAutistic or the previous two I just used?
I Toot quite a bit about me and my quirky way life. But I never really know if I "should" add any ND hashtags as the "silly" things I Toot about are quite normal to me. If that makes sense 🤔...
I'm proud enough, these days, of who I am. But I wonder if and when it would be good to add some of these tags... Maybe it could help connect with other peeps like me 😇.
Diary of an ASD Squirrel. Day 205 , Tuesday 21/05/2024
TL:DR Late up today , so was more or less ignored. Clues to whether I’m AuDHD & if I’m going thru a burnout period came to light from fellow ND Peeps.
I had a somewhat enforced lay in this morning, in that I was so exhausted that I simply slept thru all the noise that would usually wake me up.
I finally got up around 07:30. Life obviously went on without me, even though Mrs S. was working from home.
Me: I’m a total introvert & wish to be alone.
Also Me when wife zones me out because I was late to get up: I’m so lonely !!!
Is the mind of an ND bananas or what ! (Possibly some for of nut in my case 🤦♂️ )
I risked a ‘proper’ breakfast this morning - I seem to have survived it 😊
I would normally have cleaned the bathroom today, but because I’m not feeling so good that didn’t happen. I know from past experience it won’t get done until I feel well enough, be that days or even weeks 🙄🤦♂️
I wrote a little while back , when I got the results of my assessment thru , that the Consultant Psychiatrist had suggested that I be assessed for ADHD too. That is currently on hold.
But , & here’s the thing I read a toot ( linked below) from @ashleyspencer that totally spoke to me & I recognised EVERYTHING she was talking about !
Well call me a Squirrel & bounce a walnut off me ‘ed !
I number of other folk on here have suggested that I had ADHD symptoms , but I could never put the whole package together in my own head to the point that I ‘felt’ it!
Maybe I need to pull the whole ‘getting ADHD assessment’ off the back burner ?
I also realised ,based on a toot from @pathfinder (again see the link below) that I may well be experiencing a period of autistic burnout - it seems to be so similar , in key ways to where I am at the moment. No wonder I’m struggling!
Got back into the post-apocalyptic world of Fo4 this afternoon, I had forgotten how enjoyable this game is.
Final Thoughts.
I am struck once again how much I am coming to depend on the @actuallyautistic community to help me progress on my ASD journey and understand more about me!
Special thanks to Ashley & Kevin for pointing the way today. 🙏
Thank you to all those who are helping me on this journey, in a myriad different ways. I am thankful to each & every one of you! 🫂 🫶🐿️🖖
The deficit model of autism in DSM-5 dehumanizes us by focusing on external traits rather than internal experiences. It's also based in Nazi race science.
How can we push for more relevant diagnostic criteria?
I've noticed that I've started unmasking in company where it feels safe. Just little things but still. I love eye contact but instead of doing it constantly, I let my eyes wander or look somewhere else. Then I might become aware that this could be considered rude. I trust that these people don't mind. Stimming a bit. Just a bit.
I'm currently reading Unmasking Autism by Devon Price and it's super interesting. It surely resonates and I recognize myself in many places.
Reading about "female autism" -- which Price criticizes as a label -- was a real eye opener. I too am a very sensitive and likable person who adjusts to new situations quickly.
For instance, I've noticed ages ago that I take cues from the situation, mirror verbal and nonverbal expressions and mannerisms. I might not give much of my real self if the situation doesn't feel safe. It often doesn't. Plus I'm introverted so there's that.
Another example. When writing to others, I tone my reply to fit the recipient or forum. I've loved using emojis but if the recipient doesn't use them, I haven't used them either.
Burnout is a bitch. I think all of us who have experienced it, or are experiencing it, will agree with that. But, how it presents and how long it maintains its hold over us, seems to be as variable as so much else about us.
I can now recognise the many times I have experienced burnout in my life. Each one marked by my constant refrain of, "I'm just tired" and with me doggedly plodding on with my life as best I could. Even now, in the deepest and longest burnout of my life, I am still doing the same.
Of course, I at least know to try and pace myself now. To let the unimportant things slide until their time comes and to spread out what has to be done, to the best of my ability. I know to dedicate time to self-care, to rest and recreation and to acknowledging my needs as an autistic person. This much, realising you are autistic can teach you. It can also help you to spot the signs of burning out sooner and hopefully mitigate its effects that way.
When that's possible, of course. For what caused my current burnout was unfortunately a series of overlapping events that I could not avoid, or do anything about. It was almost as if life chose to keep throwing things at me, each more intense and impossible to avoid, until I broke. But then life can be like that sometimes.
Autistic burnout is, of course, different from normal burnout, in what causes it and how it presents. It is, more often than not, a breakdown of our ability to cope with the demands being placed on us and not with how much we can carry. We are used to carrying insane loads and with having to work so much harder than most other people, just to keep putting one foot in front of the other through life. In fact, I know that I never really rest, not even now. My life is one long and continuous assessment and checking on whether the routines I have in place are being maintained. Whether I have done everything, on what needs to be done and finding new ways to blames myself for why it hasn't been done yet. There is no such thing as not working as far as my brain is concerned. And because I never stop, I don't know how to stop. How to heed the signals of tiredness and exhaustion and how to not knuckle down and continue anyway. It has been the story of my life. In work and everywhere else, always push, push, push.
And perhaps this is why autistic burnout is so common and possibly even inevitable. The sheer effort that life already is. The constant raggedy edge we walk just to get through a day and how in doing this day after day, all we end up doing is teaching ourselves to ignore the warning signs and that our needs are even important. And end up learning instead, that all that really matters is the next plodding step, no matter the load we are already carrying.
Diary of an ASD Squirrel. Day 205 , Monday 20/05/2024
Was up till the early hours of this morning with stomach cramps after last nights daring attempt to eat scrambled eggs & beans for tea.
Spent the day getting lots of exercise up & down the stairs to take a pew, if you get my drift.
Attempted to interact on here a couple of times but my brain is apparently on sick leave so it didn’t go exactly to plan 🙄🤦♂️
Hopefully tomorrow will be better !
Final Thoughts.
Is the babel fish truly a fish if it spends most of its life out of water ?
This & other great questions of our age will have to wait until I can think straight!
Thank you to all those who are helping me on this journey, in a myriad different ways. I am thankful to each & every one of you! 🫂 🫶🐿️🖖
Decolonizing autism means dismantling outdated, Anglocentric views of autism and embracing the diverse experiences of #ActuallyAutistic humans in the Global South.
How can we better include autistic voices in our communities?