Category Archives: self-care

ABA, Self-advocacy, self-care, Sensory Integration, Violence against us

tools vs. “cures”

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TW: ABA, CBT, interventions, behavioralism, fake “cures”, restraints, institutionalization, murder of autistic youth, functioning labels

a tool is something that you control, either on your own or in conjunction with others, consensually.

a cure (including “cures” that don’t work) is a solution to a problem. it’s goal is to make whatever the presumed problem is – in this case, “autism” – go away. a cure can be chosen, but also, is frequently prescribed, if not forced or coerced.

given that autism isn’t a problem (and more specifically, a disease, injury, or despite the nomenclature, a “disorder”), but a type of neurology (as well as the social context surrounding that neurology), all “cures” for autism are in the “doesn’t work” category. some so-called “cures” may be helpful in relation to our support needs (or in the case of things like ABA, definitely not helpful) as disabled people – but again, that’s a tool, not a cure.

understanding the difference between the two is really important, especially for disabled people, as well as those who provide support for us. consider:

  • ABA: “cure”
  • toxic autism “remedies”: “cure”
  • CBT: both “cure” and tool (it depends on usage and context)
  • self-regulation: tool
  • interests: tool
  • music therapy: both tool and “cure” (although depending on the practictioner, neurological support is probably more appropriate than cure)
  • occupational therapy (OT): tool, solution/support, “cure” (especially if the OT is focused on “fixing stims”, rather than self-regulation.)

there’s a lot of bad information (and even worse practices) that come down to thinking that things that we do naturally, need to be fixed or “cured”. including in ways that can be trauma-inducing, even fatal.

this gets back to the need for self-advocacy. more specifically, support needs, as well as the ability to make our own choices about what those supports are.

consider this statement:

“”High functioning” is used to deny support.

“Low functioning” is used to deny agency.”

our support needs vary from situation to situation, over time.

the common denominator though is tools, as opposed to cures.

this is a huge issue for us, and could stand to undergo a fundamental shift in thinking. especially among allistic, ableist professionals who are providing education and support for us, but also, among each other in our community at times.

here’s to making that happen. ✊🏽

Autistic community, Clinical things - meh, self-care, self-dx

Self-dx and clinical dx

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TW: anti-autistic (allist) assumptions, ableism, clinical assessment (for ASD), ABA, child abuse

self-dx is not only valid, “official” (clinical) diagnosis isn’t even an available choice for a lot of us, for a number of reasons, including economic ones, as well as numerous forms of oppressive bias. in that case, self-dx is not only valid, it’s the only option.

it’s wrong to try to invalidate people over it, and it’s a personal decision, regardless. it’s nobody’s business.

imagine if people said: “yes, but are you *really* gay? are you *sure* you’re trans?”

people in fact do this as well, and they’re also wrong!

this isn’t a complicated thing – people treat it like it’s a debate. there’s no debate.

there’s also a more subtle form of invalidation that happens sometimes:

“self-dx is valid! really though, getting officially diagnosed is the thing that changed my life. it’s so important.”

the missing “for me” at the end of that sentence isn’t a minor thing. it infers that there’s a social heirachy, relative to validation, and even acceptance.

even the term “official” diagnosis has bias in it. so, if you don’t have a clinical diagnosis, you’re unofficial? like a knock off bag at the flea market?

the best write-ups on “get diagnosed or not” i’ve read are these:

An Autistic Diagnosis

https://autisticsciencelady.wordpress.com/2018/12/21/the-neurotypical-autism-diagnosis/

if you’re able to access getting assessed: don’t expect miracles. figure out what it’s going to get you, and what it *won’t* get you, then decide. do your own research beforehand, to whatever degree is possible!

*YOU*– yes, you – are the best arbiter of your own neurology. use whatever means are at your disposal to your best possible advantage, including refusing “treatment” if it’s not of benefit to you. (this applies in general, including if a dx is being forced on you, btw.)

if anybody tells you otherwise: they’re not your friend, and you don’t owe them an explanation. period.

if someone tells you that you’re not valid because of self-dxing, of being diagnosed as an adult, of not being diagnosed by a doctor? repeat these words:

“i don’t care what you think. goodbye.”

i don’t care who is saying it. professionals, parents, *deep sigh* other autistic people.

if you can get away from them, do so, they’re being abusive and don’t have *YOUR* best interests in mind.

footnote:

when dx is decided for us without our consent, it’s frequently traumatizing.

it may be useful afterwards, especially if you’re diagnosed as an adult, or not useful at all (or even harmful, if you’re subjected to ABA) — but the process itself can come as a shock.

these two things – choosing to pursue a diagnosis (including self-diagnosis) and clinical diagnosis that’s not by choice – are not mutually exclusive! we can work together. in fact, we need to work together, to take back the media and social narratives from corrupt organizations such as Autism $peaks. this includes allies — partners, friends, parents who accept and listen to us, and work together with us as advocates.

there’s no shortage of splitters and haters over this. ignore them all, and work together on getting us all free instead.

Autistic Women, Liberation, Passing/Masking, self-care, Stimming

Being “inappropriate”

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I am inappropriate on a regular basis, I have been since childhood. Doing this without accidentally pissing people off, or even hurting people at times, takes work. I’ve learned how to work with this so everybody gets their needs met (or stepping away from situations, if that’s the best option available), and not always by masking, either. If anything, I tend to mask among non-autistic friends — masking is a way of saying “I trust you enough to shift gears for your benefit, not mine, and to do emotional labor to be able to talk with you”. If i don’t trust people, I’m definitely not masked. More like *starts yelling* or *goes mute*. It’s sort of like being in a room full of grad students and professors in mathematics, and they keep assuming that because you can write equations on a board, and got a C in Algebra I, that you’re “social peers”, when in fact: you’re lost (or in a format that gets used on the internet sometimes: lost???????????).

My guess is that for non-autistics, the social imperative is so strong/assumed/acculturated, that they just flow right past checking in with the autistic person, and assume “Well, you’re speaking (even if you can’t always speak), so therefore, you’re not *really* autistic. Therefore: what is wrong with you.” Or they just assume you’re neurotypical (NT) without thinking about it. Either way, they’re a blamey bunch of non-autistics.

I’m good at being inappropriate! I do script on a regular basis, though, especially for basic tasks — that can be exhausting as well, so I’m working on eliminating it via curb cuts, or dropping it altogether if possible. I grew up in some sort of early 1970s assessed (both neurologically and queer/transly, from the looks of things) suburban subaltern, and quickly learned that I needed to adapt and find what now are called “curb cuts” if i was going to survive and/or not wind up institutionalized.

Here’s some things I’ve learned that I’d like to share, in case they might help.

BASELINE:

This is important, and gets missed in some of the online conversations about “inappropriate behavior”: it’s ok to prioritize your needs. Read that again. Seriously, it’s OK — if it seems like nobody believes in you, I do. “But I did a horrible thing!” And? Capitalism both teaches, and forces, people to do horrible things. This doesn’t mean do whatever you want, though! More like “feed yourself first, so you can feed others later”.  If the situation is more serious, that’s where transformative justice and harm reduction (if needed) come into play.

PRACTICE:

First and foremost! If you’re confused by something — if it’s safe to ask, do it!

If it’s not safe to ask, make a note of what happened to research later, and get yourself out of the situation. Apologize, if you can.

If someone asks you to stop, stop. If you can’t stop, do your best to walk away, or otherwise end the conversation.

Again, don’t beat yourself up if you made a mistake! We learn from situations, not from abstractions. (You also have a right to be who you are if you don’t know how to learn, or refuse to learn. It may make things more complicated when you deal with other people, though. I’ve found this book to be very helpful, if you’re so inclined.

ACTION:

Stim! This includes aggressive stimming/sensory seeking. It’s possible to redirect self-injurious or “explosive” stimming into aggressive stimming, and with some practice, physically safer forms of one’s sensory diet. Loud, aggressive music works *really* well for me. I flail and stim dance until I’m regulated. I still pace a lot, but I’ve learned to pace and yell when it’s just me, rather than doing so at other people, and not only as my only out until the “pop bottle” explodes. A gentle nudge in a different direction can make all the difference. “But aren’t stims automatic?” Neurologically, probably — but that doesn’t mean you’re devoid of agency, either.

I’ve also regulated my senses visually, both from still images and from film/video. For some reason, really high-contrast, and at times, violent images work for me, especially if it’s so over-the-top that the “sensitive” part of my brain is like “Ha, good one! Human existence is suffering, liberate your desires! Good pun.” (What I can’t handle: realistic or hyper-realistic depictions of violence. I used to watch The Walking Dead, and after a while, it was pretty barftastic to keep up with. I am not fond of being eaten by zombies in white cop-led Hobbesian social horror scenarios that serve as a metaphor for the extended nuclear family under extreme duress. (The same can be said for The Governor or Negan.) Ridiculous, high-contrast, cartoon-like violence? Workable and very useful, in limited doses.

TW: suicide, institutionalization, gaslighting, alt-right, MRAs, abuse

Learn new ways! Look, the rules can be very confusing. Believe me, I know, and it’s fucking ableist how people demand that we understand things “spontaneously”. But it’s possible to learn from the research of other people like us. It’s also possible to get the wrong advice from people with ill intent, and wind up harming someone as a result. So be careful, but thrice-greatest Hermes: don’t beat yourself up! A lot of us (myself included) tend to do that way too much anyway. Research, explore, learn *in whatever way works best for you*. It doesn’t have to be via words or visuals. Learn how you learn, be how you be.

Emotions, Liberation, self-care, Stimming

Anger!

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I was dancing to “Kill V. Maim” (as I do) and when the chorus kicked in, it came popping right out.

All the repressed pure anger leaked out of me.

This ties into masking for me. especially “The Anger that Goes Straight to My Hands”, but the rest of it as well.

I’m not saying that it’s valid to go off and whack someone. ;p Although that happens as well, I think it’s important to not deny that. Your reflexes are your reflexes. It’s a mistake, but shit happens.

What I’m talking about is more like this:

“If I didn’t hold on tight and ride out the physical impulse, I would lash out with hands at whatever was nearby, punching, throwing or breaking something to dissipate the energy in my hands.”

“When I read stories about children lashing out violently, I wonder if this is what they’re feeling. Maybe it’s not anger in a traditional sense but the need to release a sudden incomprehensible surge of energy.”

“In the same way that I experience pure undistilled happiness, I also experience a very pure form of anger. It starts in my brain and terminates in my hands. It’s reflexive. White hot. Short-lived. Irrational. More chemical or electrical than emotional.”

It definitely maps as an analogue to pure undistilled happiness for me. It was like this really clear rage. My fists balled up and I was *flailing*.

I’m not gonna lie, it felt *fantastic*. Like I get why people like hardcore now.

I’d always wondered why I didn’t like hardcore, but *nothing but guttural gothic screaming* was like “Oh yeah, this is good. Solid approve. 10/10”

It reminds me of this “BZZZZT” that happens if i’m shutting down or cooling off, and this…angry, visceral muck is right beneath stimming hard. My arms are flopping and flailing, but sort of mindlessly, rather than *spikes* *pure elation* or *spikes* *white-hot anger*. Just sort of ~ tranquilo ~, then up comes this repressed, nihilistic muck. It freaked me out at first, but I’ve learned to work with it, to embrace it.

I think of it like electricity that’s being held back behind a switch – if it can’t release, the current can build up, and starts eating through around what’s surrounding it.

My wondering on this: does this contribute to depression, and specifically, feelings of worthlessness? it seems like it has similar qualities, but I wouldn’t know. (Autistic burnout, that, though. Definitely.) I don’t “do self-loathing”, but i definitely have a corner of my psyche that feels like that, until it finds an outlet.

More infos:

Anatomy of a Meltdown

https://jeanettepurkis.wordpress.com/2018/05/16/too-nice-avoiding-the-traps-of-exploitation-and-manipulation/

https://autisticsciencelady.wordpress.com/2018/08/14/autistic-burnout-regression-and-identity-crisis/

CW: suicide, some self-negating takes (that have a context, see the above link to cross-reference)

An Autistic Burnout

Autism, autistic burnout, Gender, Liberation, Neuroqueer, Passing/Masking, POC, Race, Self-advocacy, self-care

The Allistic Gaze

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TW: allistic violence, conformity, ABA, murder

I don’t know if anybody has written about this in these exact terms, but it’s fairly unmistakable — it happens when you don’t adhere to allistic social norms, in terms of eye contact, speech or social interaction. It’s the “wtf is wrong with you” look.

The worst version of it is someone institutionalizing an autistic person, committing acts of violence (including ABA) against them, or murdering them outright.

The more common versions are looking at you sideways, verbally questioning, correcting, or patronizing you, or jaw-dropping silence followed by deflecting/changing the topic/making a “joke” out of things.

It’s a form of compliance insistence. It’s triggering. It leads to us being rejected from work positions (or fired from them), failed relationships (with allistics), or in some cases, arrested, assaulted or worse.

I wish I could just say “come on, try harder” and have that be enough, but I see the same thing happen from white people towards people of color, men towards women, and against disabled people in general.

As always, we need to create our own media, and act collectively in our own self-interest. It’s up to us, not them. It should be better, but as with so many movement-level shifts in society (let alone liberatory and transformational ones) it’s not going to come through mere awareness. It’s up to us to make it happen.

Autism, autistic burnout, Passing/Masking, self-care

Autistic Burnout

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“Too Nice”: Avoiding the Traps of Exploitation and Manipulation

Whew, this. I have been led astray and manipulated a *LOT* in my now-middle-aged life. It can lead to all sorts of problems, including autistic burnout, it seems.

A thing that I think needs teasing out a bit — where he says “We lose ourselves in repetitive behaviour, we Hyperfocus, we Stim, we become different characters or act as animals, we script conversations, we withdraw, we hide in worlds inside our heads, we close ourselves off, or equally sometimes explode outwards”? That isn’t necessarily negative; if anything, that list of things can be a positive part of an autistic person’s life (stimming, hyperfocus, roleplay), or a form of self-defense or release (hiding, exploding), depending. I think I’m finding myself through an *unmasked* acceptance of these things, not being thrown further afield. I’m not advocating for decking someone or disappearing to the point of forgetting to eat though, just so that’s clear. (What that can mean rhetorically, as a form of communication or being, is another question.)

Why Do So Many Autistic People Flap Our Hands?

The High Cost of Self-Censoring (or why stimming is a good thing)

The Angry Aspie Explains It All

I’m not saying this to negate what he’s talking about, which is about coping mechanisms (including masking), though. This is probably why he immediately continues the above quote with “we Mask — all in an effort to endure this world we live in, to survive, to find balance with ourselves internally and externally and also, to hide who we we are — to make Non-Autistic people accept us, because we don’t find acceptance as ourselves. This is why we burn out.”

Having been through this sort of burnout multiple times in my life, I can confirm that it is not a picnic, at all, and whatever we can do to make space to unmask, to lessen the likelihood of not burning out, and for generalized self-care and self-love, is a good thing. (I recovered one time by sleeping for four days; I was barely able to talk, even with people I was close to. It was different than being just selectively mute, it was like “OK, all systems and communication protocols are glitching or failing.”)

That all said, I’m working on putting what he talks about to practice, because I’m getting close to it happening again, and wow, does it suck. Sheer mortal fear, do not want.

Autism, Liberation, Passing/Masking, self-care

Introduction, Part Two

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I keep reminding myself that I embraced my being autistic only three months ago. While I’m doing fairly OK, I’m still going through a lot.

I used to mask a lot, and still do, although I’m working on it. Much of the masking I’ve done is/was entwined with coping and self-care strategies. I have a standing set of tools in this regard (most of which were beneficial, but not all of them were necessarily palliative as much as improvised). For example, I’d have (and still have) very strong alexithymic and hyper-empathic responses to something as seemingly innocuous as an emotionally challenging article online, or a friend of a friend who I barely knew passing. 9/11 was pure hell. In order to cope with feeling lucid, but also completely overwhelmed, I’d start improvising self-help strategies that I’d learned over the years from spiritual, human potential and self-work techniques I’ve picked up over the years, so that things wouldn’t possibly lead to anxiety, depression or if things are really tough, disassociation as a result. I definitely catastrophize things, though, and have coping/counter-inner-monologue approaches for that as well.

That all said, I mostly seem ok mental health-wise, relatively speaking. I’ve become really good over the years at flipping “fuck everything” around to “No, things are going to be ok, and even if they’re not, I’m not going to start thinking like that”. I gradually figured out that “I shouldn’t be living with 12 other people in a collective house, or doing street activism and all the stress and sensory overload that comes with it” was a wise call, even if it took having several shutdowns and meltdowns to finally get it. (“I’m just passionate. It’s not OK that I’m like this at times, but who even knows why. Maybe I’m just not cut out for all this.”) My coping mechanisms have coping mechanisms, my techniques have composites. I’m positive that years of spiritual work, human potential work, personal self-help work and therapy have all played a positive role in this.

The issue I’m having now is that the coping strategies I developed were based on a generalized concern on my and other people’s part regarding my emotional well-being, not on my or our informed knowledge around my being autistic. Many of those strategies were in response to catastrophizing, over-analyzing why something went wrong (including things from 25-30 years ago or more), or all my nerves being on fire from having an alexithymic/highly sensitive/hyper-empathic response, but it was just “that strange thing I do sometimes. Maybe it’s intuition or empathy. No idea” to me. Everybody else was either like “I’m concerned about you” or “knock it off”. So I’d do my best to try. My hope was that I’d develop better coping strategies to “fit in”, even if fitting in was more like “fitting into NT or non-autistic neurodiverse subcultures that I’m a part of”. (Yes, there are NT anarcho punks, and yes, they can be as much of a pain in the ass as NTs in general.) Eventually, I realized that my attempts weren’t working, and I moved on.

Now though, it’s like “I’m autistic! I know what’s wrong with me – nothing!” Which is great, but it also means that my coping and self-help strategies (which I had developed over decades), which were rooted in my hopes of fitting into NT society, in one way or another – are destabilized. They still work, they just “work as well as can be expected, given who I am.” It’s not just intellectual, it’s an actual shift in the way I perceive the “problem”. It’s like I’m recovering from a very gentle (and sometimes, not so gentle) form of ABAing myself, my best attempts to be good to myself along the way notwithstanding. Stimming helps, letting myself be autistic without condition or compromise helps.

I’m also struggling around what to do in terms of trying to fit into allistic society (or not). Even before I started this process, I was not looking forward to forcing myself back into the corporate software industry pressure cooker again for the bazillionth time, academia seems like a dead end, and just…wandering would be really nice, but has its risks and limitations. Where I really want to be (and already am) is in the arts, but they’re are in crisis, in terms of their economic viability as a paid, professional career.

So I’m in this in-between place where I know the things I love to do, and have for many years (thank fucking god that I didn’t get conned into giving up on my interests), but the ways to make a go of them were a struggle even before I realized that I’m autistic. Now it just seems like – *deep breath* – a lot of professional circles in the arts weren’t designed for people like me, either, even though a lot of the reason I started pursuing those things is because I’m gifted and autistic. Being autistic is intrinsic to the ways I approach making art (and technology, for that matter), and the work itself. Knowing that the tech industry has become so overrun by NT (or in some cases, autistic) dudebros who seem to think that the industry is a giant male fraternity is hard, but it’s also clear to me that I’ll never fit in with a lot of that. Seeing the same sorts of problems in the arts, where I’m freely expressing myself as an autistic person, creatively, when its the sort of life-long passion that I’d gladly do, regardless of if I’m getting paid or not, if it wasn’t only for frequent expectations to conform to unwritten rules and expectations there as well? That’s especially hard.

Even when the arts, academia or tech are potentially more accommodating to autistics (not unlike how artists, academics and sometimes, developers and designers in general are given more slack sometimes because of being “eccentric”, especially if they’re white, cis and male), the social and professional rules and practices in the arts are still largely designed and controlled by, and for, allistic society. I’ve run into this in one way or another all my life, and it seems mostly unavoidable, unless there’s a fair amount of disclosure and accommodation. Which frankly, makes me sad and angry, especially since (as I now know) “faking it until I make it” as a way to try to fit in, not only doesn’t work, it’s actually self-destructive if you’re autistic, because it’s based on fitting into allistic rules and norms.

I think (as do other autistics) that we need to create our own spaces, otherwise, these sorts of problems will keep coming up for us, and for myself. So, I’m working on making that a reality, but it’s still like…”Wait, I’m a self-actualizing version of someone whose kid got diagnosed with autism, so then the shrinks do a family evaluation, and the parent got ‘hey, you’re autistic as well’ dropped into their lap”. Except I’m both the parent and the child, so to speak. All of which came to a head three months ago. There’s only so much that “hyperfocusing to the rescue, let’s learn everything about autism!” can “fix”, in terms of my coming to terms with all this. Please note that this isn’t a form of internalized self-hatred, though! I love my autistic self. I mean fix in the sense of “ok, how do I change my life, now that I know I’m autistic.”

So, I’ve been taking things slow. If it gets too intense, I slow down, and above all, I’m working hard to keep being good to myself, while I’m also plowing through a large stack of books and films. I’m finding self-advocacy resources, including ones focused on women and people of color. I’m starting to come up with an emotional framework to compliment an intellectual one, and as Mary Catherine Bateson says, “compose my life” once again.