Laurels' Grove

[laurels]

Thank you rainydiary, thank you BeeKeeper. Your encouraging words at the end there really made me tear up. I only hear that kind of assurance from my partner, and for some reason that doesn't seem to "count" in my brain - "of course he'd say that, he kind of has to". My parents didn't call me lazy outright (only "jokingly"), but they were often exasperated about my "not applying myself" - because I can succeed and achieve things "if I wanted to" ie. if I drove myself into the ground and burned out for weeks and months. Nobody sees the amount of effort it all takes on the inside. Thank you, I feel seen by someone kind and understanding. Even my sister once said "I couldn't live like that (like me)." When I asked what she meant, she said "You know, just... not doing anything." I honestly didn't know how to reply, what does she expect me to do then, Not Live? As if this was an effect of me forcing myself to do as little as possible, instead of the opposite.

With the ASD being so disabling in terms of being able to make a living at least, I also feel extra pressure to "pull my weight" in my relationship as well, with my partner giving me so much. We agreed that I'll take care of the household, and since those are my only responsibilities I feel really strongly about staying up to speed with everything almost religiously. Of course it's never anywhere near perfect, cue anxiety. I need to figure out a way out of this mental trap.

This has turned into a proper journal entry, don't worry about replying personally haha!

[Armadillo]

Laurels,

I can't even imagine how much effort it takes to get through the days. I know how hard it has been for me just with the cPTSD layer...what you wrote about being lazy or not applying yourself....those were things I got from teachers and others and all I can think was exactly what you wrote: do you understand how what you see as not applying myself or living up to my full potential is actually me trying my absolute hardest to keep myself afloat? I'm actually living beyond my full potential is so many ways.

And then you layer on top of that having to navigate society as a transgender person and with ASD? I really can't imagine how hard you must work to deal with society's boxes that weren't made for all of us.

And please, pardon me if I missed it...you mentioned being transgender but didn't see if you had a preferred pronoun? I actually find we don't need to use them much here either way, since we are talking TO each other and not ABOUT each other.  So totally optional.

Oops almost wrote my real name!
- Armadillo (she/her/s)

[laurels]

Hey Armadillo, you didn't miss it, there wasn't a place or reason to provide pronouns so far, but if it helps you I'm a trans man - he/him/his. I'm sorry we share that experience, of being barely afloat and still shamed for not doing enough. I hope you're well on your way to healing from it.

[laurels]

Jun 26
(apart from the activity from earlier there was also a regular entry)

The other day, when I was already randomly crying home alone, I managed to successfully explain to my small self that people do love us, just show us that love in different ways, even if they let down our expectations. Initially I was bracing myself for my partner returning from his outing without a gift, that always gives me a rug-pulled-out-from-under-my-feet feeling, because I always make sure to bring something to say "Hey, I thought of you". I told myself that doesn't mean he's not missing me or not thinking of me. He texts, he takes photos on his adventures to show me later etc. And it didn't hurt when he came back giftless! This is the first time I didn't get sent off onto a spiral of worthlessness on such an occasion. I did try previously, to not get my hopes up, to explain that there's no reason he'd bring something this time, and to just stop waiting for it, but that was even more painful. Somehow, this time, I dug deeper and knew how to reassure myself.

I realized it might be connected to how little I saw my parents as a small child. They were either at work or traveling for work, for what felt like weeks at a time to a kid (not sure how long these trips were in reality). There were no cell phones back then, no emails, and we didn't have money for international calls, so them coming back with a gift was the only proof for me that they spared me any thought when I wasn't there to actively try catching their attention.

As I was explaining all this different love to myself I also got a rush of warm feelings for my mom. Before the move she sponsored my partner and I some talismans. Yes, she doesn't get a lot about me, but it's not that she doesn't care. Like - she might not be great at soothing and emotional support, but she supplemented that with that "inner peace" talisman. Ok, she didn't choose it herself, but it was pricey and she could have argued or suggested which one she thinks would be better. I know this is a bit of a stretch but it felt as if she's trying to fill in the gaps of what she personally can provide. (Even if she's not doing it consciously. Maybe it's more like The Universe is trying to fill in those gaps. I'll take it! Just need to remember not to actually attribute too much to her, not to get my hopes up there).

[CactusFlower]

There were no cell phones back then, no emails, and we didn't have money for international calls, so them coming back with a gift was the only proof for me that they spared me any thought when I wasn't there to actively try catching their attention.

That is a great observation and made me realize something. I haven't really thought about it, but I do that too. I get trinkets and doodads for the people I love when I go somewhere they might have also enjoyed. A way of saying, "I was there, and I thought of you, and wanted you to know I thought of you." I wonder if it's a generational thing that might be gone in a few more decades, then? How fascinating. Now that I think about it, most of my friends my age (51) and older also do that. Heck, I remember when you had to be choosy with photos because you could only afford to develop so much film.

[laurels]

I don't know, Sage, maybe! It could be generational for sure, I'm the generation "between" pre- and post- internet world. Childhood without it, adolescence with it. Most people I know who are my age and higher do that, for sure, but more like - when they go on holiday or visit somewhere special. I don't know if you meant the same thing but for me it's pretty extreme. From my partner, whom I spend a lot of time with (and because of my household duties it's very much like I care for him) I hope/expect it at Every separation. That seems a bit over the top. I wonder if part of unpicking this should be stopping my own "overgifting". But I do love to let the people I love know that I miss them/think of them when they're not there. Hm... Then again they might not even notice to the degree that I do, not everyone has such a strong emotional connection/reaction to this. Need to think about it.

[laurels]

Jun 27

I decided to try the emotional skills exercises, I think they were from Jonice Webb's book. I noticed a big change previously, even just doing one or two. I saw myself as much more of a... real person? I had warm feelings towards myself. But I never got to the end of the (fairly few!) exercises. I'm hoping posting here will help keep me accountable.

Exercise 1 (checking in with your feelings three times a day, allowing them, expressing them, and following up with an action if necessary), day 1.

• Morning - frustrated. Partner was being grumpy which I interpreted as passive-aggression.
• Afternoon - resigned. I want to feel accomplished, I've done a lot today, but the cost was very high, and there are still things to take care of, dinner to make etc. I'll have a rest now.
• Evening - disappointed. That I "didn't have time" for more self-care.

____________

Realizing how much neglecting my ASD in the past has hurt me, I noticed I could be doing more to help myself now. I already don't have to go to school or work, so that's a big weight off my shoulders. Not getting daily social burnout felt like such a win that i assumed everything else I can just cope with. But that's still enacting this neglectful attitude I was taught. I want to at least try, even if just to show myself I'm worth the effort, even if nothing else comes out of it. First order of business - looking into a sensory diet.

From neurodivergentrebel.com:
"A sensory diet is a program of carefully designed sensory activities that people can do during the day to ensure that they are getting the input their bodies need, helping people to keep their sensory systems in check and properly regulated"

What is my sensory profile? My own specific needs?

Things I know make my ASD happy and cooperative:

• showering
• dark and quiet
• bland, soft foods
• weighted blanket
• soft pettings
• twisting things in my fingers
• nature, fresh air
• tidiness, no clutter
• angry/grindy music (if stimulation is needed)
• harmonious colors
• "being" meditation
• swaying/rocking
• soft, fluffy textures
• hot cup of tea
• hand massage
• crafting/otherwise fiddling

I'm not making an official plan yet, to not distract from the exercises, but I'm going to try and implement some of these things more consciously, instead of only in a crisis.

[laurels]

Jun 28.

Exercise 1, Day 2.

• Morning - calm, peaceful. Taking a moment to sit in stillness before the day officially begins, listening to the birds, petting the cat.
• Afternoon - excited. The rain is wonderful for my senses and I discovered the bathroom here gets completely dark - no light for the eyes to adapt to. Amazing sensory potential.
• Evening - slightly guilty. About not working on a group art project I'm involved in. I managed to both rest and do household things without planning much today, but this ting that I'm "supposed to" be doing for fun eludes me right now

(Later comment: I was tempted to still work on it after this assessment just to ease the guilt but I didn't force myself to).
____

Early in the morning I gave myself a kind of overview tarot reading about where I'm at. In short I understood it as a warning against trying all the new things I'm excited about - pulled in so many different directions, and focusing on preparing, clearing ground. I want to skip ahead but it's not time yet. I'm thinking of it as laying ground work for implementing a sensory diet later. Right now I can't impose rules and schedules for myself, I don't consciously know enough about what I need. But my body knows, I have to trust it. Whether it's rest, or going for a walk alone, or sitting in the dark, I have to take that step to actually Act on the knowledge, the longing. I'm letting my body lead today.
____

Letting my body lead today has been nerve-wracking. It's hard to believe that taking care of and supporting myself could result in any work getting done at all. I've been told so many times that I don't try hard enough, that I'm afraid to let go of stressful to do lists and schedules. But nothing bad happened. I've been able to keep up with regular maintenance of self and home.
____

I've had such a pleasant moment - I laid down on the balcony as the sun was getting low and just looked up at the clouds and sky (and visual snow and floaters). Listened to the birds in the nearby park, to the neighbor's classical music (tried to tune out the kids and cars). I just moved my arms and hands in whatever way felt right, ran my fingers through my hair. It was amazing and I realized I hardly ever allow myself something like that. I'm hardly ever not-masking. Once again I addressed the one huge problem (allowed myself to not worry if I suck at eye contact) and forgot that I could be doing so much more for my well-being and happiness. Well, I didn't "forget", it just didn't occur to me to do more than the minimum. It's "just" me, why would I? /s

Remembered I got made fun of for this sort of hand stimming a lot in grades 7 and 8 when we moved back to our home country. Learned not to do it. Felt almost... double shame about it because it was one of those late realizations. "Oh! They were mocking me all along..." and I'd been oblivious.

[Armadillo]

 

It takes a lot out of us to mask things. I'm so thankful that it sounds like you are more able now to be as you are?

It sounds like you are doing amazing on self-care and getting stuff done and that you know to move forward you have to go slow.

[laurels]

Hey Armadillo! Yes, masking pain or who we are is very tiring, and often reinforces the unfounded belief that we're somehow wrong (we should be hiding). I was referring specifically to autistic masking, but I can definitely see how that transfers to other things, things that might be more about shame for example.
https://theautisticadvocate.com/2018/07/masking-i-am-not-ok/

Unfortunately while I intellectually understand a lot about how it's ultimately harmful, I still don't have that inner knowing that would enable me to act on that intellectual knowledge. I get glimpses of that body-knowing when things are going great, I remember how free it can feel, but I haven't crossed that threshold of just being as I am by default. I have a bit of relative freedom from masking because I just... don't go out. I don't do social interactions in the real world. And I'm not sure if that's protecting myself, or hurting myself further. Occasionally I'll try something, like a few years back I joined an LGBTQ choir - I love singing. But having to be around people regularly was too exhausting, and I had to quit a few months in. Maybe building my confidence would help. If I tried not-masking with someone other than my partner and my one autistic friend and saw that it's ok...? Even if someone would stare or say something about me being weird, maybe I could learn to trust that that fear response that happens isn't Actually life-or-death. I might add that to a Project List haha! Right after "finish the emotional exercises" and "figure out a sensory diet". "Try not masking occasionally where other people can see me".

[rainydiary]

Oh Laurels, I am so grateful you know the work of the Autistic Advocate.  I am taking a course with Kieran right now and I always learn so much from him.  I am NT (I think) but work with many neurodivergent people and need and benefit from checks on my understanding.

I appreciate you reflecting on Autistic masking.  I hope that you find things that work for you and that you find ways to not mask when it feels safe to do so.   

[laurels]

Thanks, rainydiary. I am all for autistic-led self-advocacy. Nothing about us without us! I'm happy people are beginning to listen.

You know what's funny? I actually studied clinical psychology at uni, and nowhere in the depersonalized abstracted medical terms did I recognize myself. I only realized "what the heck is wrong with me" when I found the autistic community online. I really hope more and more professionals will start seeing us as people first, instead of a set of troubling incomprehensible symptoms or almost-non-humans. That's a problem with many disabilities and neurotypes - the medical definition seeks to identify (and later cure) the symptoms that distract and distress "normal" society, instead of seeking to identify and accommodate the problems the person themselves are facing.

Sorry, got a bit intense there. But if you have the chance you can tell Kieran he's making a difference all over the world His website was the first place I heard about autistic burnout and that was a term I was sorely missing for my "unexplainable" breakdowns, like clockwork - every 2 - 2.5 years. I regularly pass that article along to people.

[rainydiary]

Laurels, I appreciate intensity and it is understandable.  I haven't read Kieran's article, just heard him speak.  But I wonder if it is written in a way that would be accessible to high schoolers I work with (I am a speech language pathologist).

It is so hard to change a culture, especially when this horrible way of seeing people is embedded in professions.  My current approach is to give my students space to be themselves and teach them to tell others what they need.  This has been seen as progressive by my colleagues and some of them are actively being unsupportive of me as a result. 

A part of this is that given my experience with CPTSD, I see students I work with being traumatized (hopefully not by me but I acknowledge I am human and have made mistakes).  I want us all to live in and work in and learn in ways that make us all feel included and accepted for all aspects of our identity and being.

I didn't mean to take over your journal, I just appreciate your speaking your experience and want you know that I am out there doing my best to support the people in my world working on similar things. 

[laurels]

And I appreciate your honest efforts to enact change and do good in the world, rainydiary

Here is the autistic burnout post - tw for a lot of suicide talk.
https://theautisticadvocate.com/2018/05/an-autistic-burnout/

I would have been ok with it as a highschooler, but the subject matter is pretty heavy, so it might need some caution.

[rainydiary]

Thank you, I'll look at it and see even if there are parts that would be helpful to share.