How old were you when you understood that you’re #ActuallyAutistic ?
While I was 3 when I received my diagnosis, it wasn’t until years later that I knew what it was and even more until I had internalized what it meant. Approaching my 4th decade, I’m still figuring it out.
I wanted to write a bloggish post about the etymology of the word autism, and I wanted to be precise as to how the word was coined.
The wikipedia article for "the history of autism" naturally came up first, with this disclaimer I'll attach.
It struck me as funny and slightly ironic that an article about autism was deemed "too long to read and navigate with too many overly lengthy quotations".
Much to my shock I realised that I could be autistic when I was 53, roughly 7 years ago. And it was a shock, even though I suspect a very small, well hidden and very much ignored part of me, might have suspected. No one told me about it, or suggested that it might be the case. I did not see myself in relatives, the way so many of us do. I just happened to come across an autism test online and for no particular reason, took it.
It was that, that started me on my path to realising and finally accepting the truth that I was autistic. But, looking back, I sometimes find it hard to understand how I didn't know earlier. So much of my life now, just screams autism at me. But even ignoring the horribly ableist and medieval view I had of what autism was, the main reason why I didn't was probably because I could mask, both from myself and others, so well.
It was, I realise now, a life lived in denial. A denial of how much things bothered me, how much effort I had to put into things. Even a denial of the things I knew I couldn't do. Because this is the thing about appearing to mask so well, for so long. It is, in a sense, a lie. I couldn't mask well, if at all. Not all the time. Not in all situations or circumstances. There were things I just couldn't cope with, or even begin to deal with. But the trick was, that I either knew about them, or learnt the hard way about them and then I could manage my life to avoid them. Because they were things I could live without, without affecting how I appeared to be coping. Things that didn't affect the way I lived, even if they did affect my sense of worth. Because, how broken did you have to be, not to be able to go to crowded events, like a sports match, or a concert? Or to be able to deal with the socialising of a large gathering, or a family event, without having to hide in the kitchen, or forever outside, or break down in a toilet?
It was all part of how I masked myself from myself. The internal masking, as I like to call it. If I couldn't cope, then I was broken. If I couldn't stand something, then I was too picky, or sensitive, or I simply needed to learn to ignore it. And somehow I did learn. I learnt how to cope with noise and smell and visual overwhelm. I learnt to not let things bother me. To a point at least. There was always a step too far, when I couldn't, or didn't have the energy any more to maintain it. And this did take energy, a lot of it. Something I've only realising now that I don't have the energy to spare to even try it. Or the ability to, in many respects now that I know what I was trying so desperately to hide from.
Because when the truth is known, it's far harder to deny it. It's far harder to live the life where appearing to cope, is as good as coping. Where blaming yourself, is easier than seeing others faults. Where ignoring the pain, makes the pain go away. It's hard to see the mask as a benefit and always a good thing, rather than the shield and tool it always was.
I have a number of question for people who report #aphantasia :
Do you daydream at all, and if you do, how does that work without visuals?
How does your memory work in general? Assuming you remember seeing things, being in places, meeting people, how does that work?
When you need to describe the appearance of something, how do you go about doing that? Do you plan ahead and memorize lists of features while the thing is in front of you?
Thanks! I’m trying to wrap my brain around this phenomenon I can’t experience myself so if you take some time to educate me I’ll be forever grateful.
Diary of an ASD Squirrel. Day 162 , Monday 08/04/2024
TL:DR My mother warned me there’d be days like this ! (Not really she never knew I was autistic .)
Up at 5:45am, not by choice I might add!
Breakfast, being abused by the mogs & then chores started the day.
It’s really weird what triggers me.
So our new neighbours across the street from us (who I have met 1 half of (Bev) once ) asked us to be key holders while they are away for 2 weeks . Which is fine.
Me being me started doing the job properly & popping over of a morning & of an evening just to check it was all locked up.
Just went over (circa 10am) & did my checks & it turns out they have a Ring doorbell.
I’m walking away & this voice shouts out ‘Hello?’
Long story short, it turns out it’s Ian , Bev’s hubby (who I have yet to meet) wondering why I’m wandering around the property. I explain & it’s all good.
Only it isn’t … I feel like I’ve been caught burgling the place , anxiety levels are thru the roof & I’m close to closing down as I write this.
It has destroyed the whole morning - I KNOW this is illogical, I KNOW I’m catastrophising but I cannot shake the feeling I have done something wrong !
I don’t want to feel this way again so I will be giving the place a once over from our front door for the duration.
So spent the afternoon on ESO hiding away form the world !
Final Thoughts.
I always thought the catastrophising was a function of my depression , now I’m not so sure. I do know that social interaction with anyone I don’t know freaks me out.
Humaning is hard - am Squirrel !
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! 🫂 🫶🐿️🖖
In 2022, via the @IrishExaminer, I've been lucky enough to pursue my grá for the chats on a full-time basis.
From Ireland's neurodivergent community, its DIY arts scenes and the Irish language; to astronauts, particle physicists and gosh-dang, mother-heckin' Super Mario.
TL:DR Alexander G. Bell will be turning in his grave ! ; My friends must think I’m a screw loose! ; Don’t bring that slide rule any closer ! ; The inner child in me is excited as anything!
I really need to remember to write this thru the day. Given that I managed to lose my AirPods precisely 2 feet away from my head doesn’t exactly bode well on the memory front 🙄🤦♂️
I found today that my aversion to using the phone is seriously deeply seated!
I really wanted to speak to a really close friend today, but could not. I lost my airpods as mentioned above & my autistic self told me that my friend would judge me (as I had txted them about the loss) & refused point blank to use the phone to speak to them.
I was perfectly fine texting them, but speaking to them was out of the question !
Just had a bun fight with someone who misread a toot & then argued with a coder & claimed that coding wasn’t easy & absolutely needed a high degree of maths capability. Hmmmmm.
All I can say is my 13 year old Niece can run mathematical rings around me & ,for me at least, programming isn’t that hard. Except Assembly Language, which was created to punish programmers who wouldn’t eat their greens !
Oh and I’m sharing TLs with @ niamhgarvey@mastodon.ie! 😊 does slightly excited little dance (I de-tagged her because I don’t wanna flood her TL with my nonsense!)
Well I think that proves both the inner child in me is alive & well & that the bit in the Triad of Impairment about not comprehending correct social behaviour holds true for me!
Final Thoughts:
Conquering my ND tendencies may prove harder than I thought, who’d have thunk that speaking on the phone with a dear friend would be harder than actually meeting them face to face? (They live 500 miles away so no real chance of that in the foreseeable future 😔)
I wonder if one of my autistic ‘super powers ‘ is the ability to code without any competence in Maths ?
Hey is my inner child ND too ?
Thanks to all my friends on here & all those who are helping me on this journey, in a myriad different ways. I am thankful to each & every one of you ! 😊🫶🐿️🖖
Especially interested in suggestions from the #ActuallyAutistic community.
My 3 year old has just been diagnosed with #autism (level 3 for communication, level 2 for sensory). He is (essentially) nonverbal with limited other communication skills. He destroys tablets and tries to eat (or feed the HVAC vent) PECS cards.
They recommended outpatient speech therapy in addition to at school. That's cool, but... 1/
What do you do when you run out of spoons? I mean: how do you spend this time when you no longer have the resources for any meaningful action and before you regenerate them?
I'm really struggling with this one, and I'd love to know how you deal with that time.
The vast majority (but NOT all) #ActuallyAutistic humans live with alexithymia, making it difficult for us to either engage or express (sometimes both) with our emotional state.
When combined with interoception issues (in our bodies) we lose access to just about all feelings besides those that we intellectualize.
Getting in touch with both our emotions and our physical embodied sensations is essential for living fully.
I saw a post on another social network that felt a little aggressive about people needing to learn to use tone tags (to which most of the replies were people who had never encountered a tone tag), and I found myself wondering... Do #ActuallyAutistic folks find this useful?
Honestly, I have a hard time remembering what they all mean much less use them as an indicator of what tone I should be applying to what I'm reading or writing.
Do my #ActuallyAutistic comrades consider themselves to be “spiritual” (whatever that means to you) or people of faith? How does that connect to your autistic self and brain?
something just reminded me of something else which has had me wondering for a while if any absence of fear, whether occasional or longer, might be an #actuallyautistic trait. @actuallyautistic
I'm #ActuallyAutistic and I know food preparation is difficult for many folks in the community.
But learning to feed yourself is a skill that has cascading effects (I get severely depressed if I don't feed myself food I like). Not to mention, not everyone has the $$ for takeout
TL:DR My time management sucks ! ; I knew the positive streak was too good to last ! ;I’m totally focused . . “oh look , squirrel!’
Busy day today.
Up at the usual time, but mixed chatting with my bestie with a little NMS to try & get the Expedition moved fwd.
I’d like to say that I jumped to the whole ASD stuff after breakfast, but I’m back to being well enough for the game addiction to be present so lost another hour to that 🙄🤦♂️
I spent the morning fighting with the scanner to persuade it to scan the ASD Informant reports in & then collate them into the right order , came close to just chucking the thing out the window !
Spent a couple or 3 hours this afternoon playing NMS co-op , enjoyed it enormously , although did feel guilty that I had failed on concentrating on the ASD stuff left to do!
Late afternoon into this evening was spent summarising up my educational & employment history, boy have I done a lot of stuff ! I could have done without being reminded that 2012 was the last year I was able to work due to a massive MH breakdown.
A call with the elder of my sisters was a nice way to end the day.
Final Thoughts:
I rediscovered why I don’t work anymore, having fought with a mix of the technology , my stubbornness to cough up to renew our MS 365 sub. & reminders going off left right & centre for stuff I had put on a back burner for today , I was thoroughly frustrated with everything by the time my Sister rang this evening, to the point where the cats & Mrs Squirrel had vacated the immediate vicinity and various pieces of tech were in severe danger of being lobbed across the room!
I don’t do defeat, I do however work on the basis of a deadline to force me to do stuff, which then leads to frustration if stuff goes wrong!
To thoroughly misquote Yoda ,“Frustration leads to anger , anger leads to hate , hate leads to the dark side ! “
Tomorrow morning will absolutely have to be dedicated to finishing this flipping ASD Self assessment report !
I can prevaricate for England it seems !
Thanks to all those who are helping me on this journey, in a myriad different ways. I am thankful to each & every one of you ! 🫂 🫶🐿️🖖
How did you make a more robust sense of self? How do you know when your sense of self is strong or weak? Interested to hear people's lived experiences.
Years of dissociation and masking makes it hard to feel what is me.
Diary of an ASD Squirrel. Day 132 , Friday 08/03/2024
TL:DR Walking is on the way to becoming a daily thing. I realised today that folks I have told about being ASD are avoiding me !
Overslept this morning , managed to catch herself in passing as she left the house to go to the office.
Is it the sign of a healthy relationship that we see each other for about 3 hours a day, even when she’s working from home.
Went for a walk again today - got a new ‘short’ route to go fwd with. At 2.5km - about 4500 steps - it’s not dead long but there is a mix of terrain & some steep bits so it’s not a bad route at all. It should be fairly picturesque in the right conditions (so long as I look away from the new new housing estate! )
I have discovered something disconcerting, not upsetting per-se but defo disconcerting.
With the exception of the lovely Peeps on Mastodon, most of the older people I have told about my ASD have not been in touch since I told them.
I know a number of people on here are actively resisting assessment because of the fear of stigmatism but that has never been a problem for me (& still isn’t ). I am surprised at the fact that (in the case of my Uncle & Aunt & my Dad) folks that have known me literally all my life now want even less to do with me than they did before.
I’m a loner, always have been (with the exception of herself) , so never been that close to my family , certainly not since I moved away from my parents, but to not hear from any of the seniors (or indeed my friend across the road , who I told a few weeks ago) is, as I say, disconcerting.
Despite others reactions I am steadfast in my resolve to get a proper diagnostic assessment ,I NEED to know . Bollocks to what others think. If they think that I am suddenly different because I know why I am the way I am then that is on them!
Watched ‘The Godfather’ for the very first time (yes I know ! ) I can see why it is something of a cult movie.
Got Parts 2 & 3 on my movie radar.
Managed to squeeze in an hour or so of NMS in, wanted to finish Phase 2 of the rerun of Omega but got distracted , so I now have objectives in every phase complete , but only phase 1 completely finished.
Watching ‘Silent Witness’ with the help of a couple of pints of cider & a pizza.
Final Thoughts:
We like to think that 2024 western civilisation has reached the point where things like mental health stigmatisation are in the past. Sadly this is not the case.
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! 🫂 🫶🐿️🖖
I was noticing that my cat and I seem to share some behaviors, which made me wonder if cats aren't a little bit autistic. Or maybe I'm a little bit cat?
Which gave me the idea to come up with a facetious self-assessment quiz: Are you autistic, or are you a house cat?
I’ve been reading about “stimming in autism”, which up until now was very confusing to me mostly because that’s the one point kept being repeated in the community being a must for an autistic individual. And I can’t relate to that at all.
Then I came across something that describes the purpose of ‘stimming’ is to deal with extra energy. Then it kinda hit me, I’ve never had the need to stim because I’m a low energy person in general.
I get overwhelmed with activities when they involve raising heart rates (yes, THAT too). I like quiet things, dead of night etc. Once at a time in my life, I was pretty sure I could hear flow of electricity.
So my question to the #ActuallyAutistic community: do you think stimming is a must for autistic people? Do you relate to it? Anyone know of any low energy stimming that gets overlooked?