Wherein I think too much (but not too too much) about (not) speaking

Henceforth and hereto, let it be known that this post, written between last night, then rest, then again at 3:30 AM, on this day of the year of the corn, 2019, shall be referred to as “being back on my bullshit”. Let it be known that I, queen of the internets, may venture into the dark realm of zoo exhibits, in order to gather our tally-hos as a community subgrouping of wretches, each in our own unique ways, as it so befits us, amen.

Enough with the puns, here comes the sex pistols.

Someone mapped out their speech levels, from fluid speech to non-speaking. This is so great and happy-making. I got to thinking: what if all of us who have varying kinds of speaking challenges did this? Here’s mine:

~~~ You have now entered the inharmonic passing realm ~~~

1) Speaking-as-masking. This is limited for me, and burns me out, but it happens. Sometimes, scripting works, but I try to limit it. Also, there’s this point I get to sometimes as I’m starting to enter social burnout where I can speak defensively to try to get someone to shut up, but that doesn’t last for long, usually. If I switch between levels, as described below, sometimes it can get drawn out, which…sighs, that usually makes (masks?) things worse (walrus?). This, along with alternating 2, 3, and 6a, is how I was able to be onsite as a tech writer, even if it meant falling apart when I got home (or on the job). sings We bring more than a paycheck.

2) Info dumping. I can speak fluidly, but about interests. Anything else, not so much. Which is great – if someone wants to listen to me info dump. (Yes, I need more friends with shared interests.)

3) Reading things off a page. I can usually do this, especially if it’s about interests, but also, if I have the energy, in general as well. Same goes for memorizing, although that’s tiring to rehearse, says the time I started to slide into autistic burnout because I was performing out too much.

4) Faking non-fluid speech. This requires some explanation. I’m close to non-speaking at this point, but I can rest on words, or utterances, to fill the gaps between not being able to speak.

Me: “Hunh. (pause) Let me see. (…) (…) (…)”.

Someone: “You ok there?”

Me: “Yes, give -” (…) “OK.” <mirrors “thinking something through”> “Wow, OK!”

Eventually, I can brokenly get the thought out, or sometimes, info dump a few paragraphs all at once.

~~~ Unmasked demarcation line, here be dragons and cephalopods ~~~

5) Blurting, echolalia, exclamations. (Hi, I can’t converse via speech for shit! :D) But also: “Shit!” “Mierda!” “What am I doing?” “uggggghhhhHHHHHHH” “ok, ok, ok, ok, ok.” Ok.

6a) Not speaking, because burned out. You couldn’t pry it out of me. I can type and form sentences, and write, just fine, although grammar may start slipping a bit. Maybe wait a couple of hours, or a couple of days, or a couple of weeks if you need me to talk. ASL is good btw, AAC is quite nice.

6b) Not speaking, because not burned out (or recovering from burning out). I’m happily ping-ponging across all the other levels, including the ones below, while working to be aware that 1-4 can use up all my spoons, then I’ll start burning out — so careful now, autienaut.

7) Not grammatical. Definitely not speaking. I’m still thinking, but ✨ it might ✨ shut off at times, or be more emotional, visual or auditory in nature. This is about as close as I get to being so-called pre-verbal, but wait!

8) “Post-verbal“. Aw, the poor middle-aged puzzle piece! Such fortress, much walls, wow. Earth-2047 Autism $peaks is quite worried about fluid adaptation. “Your parent isn’t like my child!” I’m in my own space, whether or not you decide to join me there, that’s your business. This usually happens if I’m really burned out, but it’s fluid (yes, there’s such a thing as being fluidly non-speaking) in motion between 6-7 as well. Come sit, we won’t walk.

So, there’s my levels. They tend to be somewhat discrete, but they can vary somewhat quickly, and can mix together at times.

The thing that gets me (and makes me sad and angry, tbh) is that people, NTs especially, don’t see how amazing this is – how there’s such a range of variations in human experience, around something that’s assumed to be completely binary in nature. “You either can speak, or you can’t.”

Also, all of our experiences across the speaking continuum, vary so incredibly between each one of us!

Ignoring this is another way that NT society misses out on the depth and range of our lived experiences. It’s both a shame, and their loss.

Another thing I’m (thinkthinging about) in relation to being intermittently non-speaking (or as Paula Durbin-Westby calls it, “non speaking (at times)“) is “what happens when I’m not in social or autistic burnout”? Especially since if I’m not in burnout, I’m still intermittently non-speaking, it’s just not as likely to be ✨ (Nope, not happening) for hours to weeks at a time. There’s been times where I knew that I wasn’t in burnout, such as when I had several days somewhere quiet, and was rested and relaxed — and I mostly couldn’t speak then, either.

Not being able to speak for me is a way of recovering from masking — just as masking in general can lead to burnout, and require a period where our defenses against NT society are stripped bare, so too does “speak-masking” require the same. (Amen.) As well as it being something that I just do. It happens, or doesn’t happen, or whatever.

I do wonder about what speaking would look like on a more regular basis, as letting go of cycles of burnout and recovery become (hopefully) more common, post-self-affirmation. Is it echolalic? That’s pretty well a given, but what if I have echolalic metaphors that point to echolalic speech and thought? I’ve had that happen. “The NTs, they are quite alarmed.”

Would I have my own dialect? Would I make up my own words? (I’m very certain of this. I love neologisms.) Make up my own frigging language? Would I sing things? (That’s probably a given as well — stimming! Interests! Stimming and interests! Yayayay! Joy++++!) Or some mix of AAC, ASL and all of this?

I haven’t *even* gotten into typing/writing, and how that interacts with (not) speaking. What if this entire post is translated into neurotypical rhetoric? (It is, btw. Paging Melanie Yergeau and Julia Miele-Rojas, intracommunity dialogue courtesy telephone.) My assumption is that at least someone who isn’t autistic is going to read this. Maybe. Who knows? Why even translate into NT-speak, though? What if my language was mine, and mine alone, and that’s OK? What if meeting us where we are was the norm, rather than NTs demanding that we do all the work?

So many questions!

Autistic self-affirmation superstars vs. busy body identity policing bullies

TW: venting, community dynamics/conflicts, bullying, identity policing, gaslighting, curebies, counter-aggression, racism, ableism, police shootings, violent assault and murder of autistic people, “bad autie” stereotype

Fair warning: this is a much harsher tone than what I usually post here.

Every community has their self-appointed identity police, that constantly ride people for not being <thing> enough. I’ve been carefully considering the situation around this, at times in detriment to my own health and well-being. Given that I appear to be far from alone in this unfortunate outcome, here’s my carefully considered summation:

Fuck off, you abusive curebie dungnuggets. I don’t care what you think.

I know that there’s people who think the opposite: that there should be far more gatekeeping of who is and isn’t Autistic, not less, but frankly, again: I don’t care. You don’t get to control the rest of us like that, it’s cruel, if not sadistic. I refuse to even entertain this sort of assimilationist, supremacist, gaslighting as fuck garbage thoughts past that. If every once in a blue moon, someone sincerely questions if they’re autistic, then finds out that they’re something else, that’s *COMPLETELY FINE AND HAPPENS IN ALL COMMUNITIES*. A few very annoying VOCAL members of our community act as if there’s never been a single straight person who was “lesbian in college”, and *SOMEHOW*, the LGBTQIA+ community is doing just fine, despite this. (Don’t assume that coming out as LGBTQIA+ is less life-changing and critical than “coming out” as Autistic, either. They’re both significant life decisions, with their own benefits and costs.) Autistic-questioning people aren’t flooding the gates, that’s some terf-like nonsense, settle the hell down, please.

I’ve seen this happen in the LGBTQIA+ community as well. “Who gets to belong? Who is really trans? Do you have to have surgery to *really* be trans? Are enbies valid? Is “autism is a gender” valid?” Sometimes, it can feel as if Tumblr has taken over the whole damn planet.

That said, I got this sort of thing cleared up for myself years ago, when I read this article. (Fair warning: it’s long. 6,000 words long.) We may or may not be past the point of having to guardedly form ourselves as a (figurative) nation, but I’m very certain that policing who gets to be Autistic is toxic, and benefits nobody, including the people insisting on trying to do so. (If this is you: think of all the times you could’ve been stimming or happily enjoying interests instead of obsessing over who does or doesn’t belong.) I much prefer Amy Sequenzia’s approach, which is also the position that ASAN takes, and that many members of our community (and researchers) share as well. *This* is how we learn how to share and grow together as a community – and in turn, increase the probability of being able to shift public opinion of us in our favor, by fostering a mutually supportive and beneficial community for *all* of us. What policing who is or isn’t autistic does is reinforce the idea that being Autistic is something undesirable, because <sarcasm>after all, we’re made up of sufferers and Potentially Dangerous Visual Clickbait, erm, Persons™</sarcasm>,  not a vibrant community of individuals, each with our own unique life experiences.

“But really, what if someone’s just faking because they think autism is a fad?” Are you kidding me? Autism has never been a fad. (I swear, if you compare this to white people appropriating Black or brown experiences, my mixed-race ass is personally going to stuff a smelly tube sock in your “stfu, racist” mouth.) Every group of marginalized and oppressed people has their “what if we’re all like you, a little?” moment in the media spotlight, and that moment has mostly passed for us (and was barely a moment – a mostly shitty moment – to begin with). I’m a *lot* more concerned over the tendency to frame us all as dangerous or even murderous (cliff’s notes version: we’re not only not dangerous, we’re far more likely to be violently assaulted or murdered than the other way around). This is patently obvious to anybody who uses their preferred search engine to find out.

There is a standing bias against people self-dxing. This shows up in subtle ways as well as obnxiously obvious ones (as noted above). “Really, being clinically diagnosed was the best thing that ever happened to me. It’s the way forward.” No, *informed self-awareness and acceptance* is the way forward, how that happens depends on someone’s life situation. Not everybody gets “caught” (word choice deliberate) by the school system, not everybody can afford diagnosis, not everybody sees a reason to “confirm” what they’ve come to on their own, and who knows how many of us are in some sort of liminally autistic void between the societal goalposts. It shouldn’t be anybody’s job to decide that someone isn’t Autistic, “officially” or not. That ultimately is a personal choice, even if there are differences of opinion, clinically or on a community level. Go live your own life, we already have way too many people trying to control (or end) ours. Priorities.

What if we talked about being Autistic as a self-affirmation process, rather than diagnosis? By which I mean, whatever community-based tools and *actually supportive* community processes we have in place to figure out if you’re autistic, that’s fine, as is encouraging autistic-questioning people to take their time and do their research, and from that, choose whatever diagnostic pathway is best for them, including not getting clinically diagnosed (or even, depending on the person’s situation, even letting other people know that they’re Autistic, on the basis of *their* needs, not someone else’s). (BTW, this is no different than the process for people who come out as trans. Again: life-altering choice.)

Self-acceptance is where the actual healing happens, regardless of age or background. Whether that’s by doing a well-researched self-diagnosis, via a clinician, or both — no matter if you’re six, or 16, or 36, or 60, or 100, your life is yours, you Know Why, that’s enough. Welcome to our community.

“Shoes off, fists up”: a hearty fuck yeah for public stimming and righteous, focused anger whenever and wherever we damn well please

preface: like Lydia Brown, I’m not posting this as a call-out of Dr. Loftis. i may not be *thrilled* about the things she appears to be saying and inferring, but that’s different.

i read an article by Lydia Brown about organizing in the neurodiversity movement recently, it’s good and i definitely recommend reading it.

however. having an academic-tinged debate over where and when stimming is valid, and what stims are valid when, and how much, and in what context, and of course, i’d never tell anybody not to stim, but have you considered…

*record needle scratch*

i’ve considered your consideration and chose to ignore it!

that’s sort of crass, admittedly.

*turns off the PA system, walks off the stage – and my parenthetical high horse.*

I don’t like respectability politics. we definitely, as Lydia’s response notes, “need to have our shoes off and our fists up”. that said, i have some thoughts about how to figuring out *on your own* what’s ok or not ok in terms of being “performatively autistic”, which i’ll get into, but in terms of stimming publicly?

stimming is great. do it whenever and wherever you can do it: if you choose to, if you need to, if you have no control over it. it’s *yours*, not anybody else’s. stay safe of course – don’t become a target for violence, either from the police or abusive people in general – but otherwise? go to town.

we get enough pressure to not stim, we definitely don’t need “stim policing” as part of our community work. stimming is valid because it’s valid! if you stim to self-regulate, if you stim because it’s involuntary, if you stim because it feels good, if you stim and feel guilty or ashamed, regardless of whether or not it’s a so-called choice: you are loved. do what works best for you, so we can all celebrate (and fight) together.

there’s a way that doing organizing work, especially in activist and academic circles, can turn everything into an endless rehashing of debates, both public and private – when the answers to problems have already come up, and even been addressed and resolved years ago.

the “self-narrating zoo exhibit” critique is part of doing productive advocacy work. it allows us to figure out “how much is too much” on our own, and when it gets to be way too much (as is the case with certain well-known authors, who use their personal experiences as a sort of bully pulpit to bug at the rest of us, especially those of us who have regular or daily support needs), *then* it becomes a community issue.

in contrast, calling on us to constantly self-check if our stimming is “performative” is more like an invite to nervously wonder if we’re doing it right, if we’re lacking authenticity. i know that’s not the intention, but it’s entirely possible that it’ll get taken that way. i’ve seen this happen a lot in activist circles – suddenly, whatever is being critiqued in specific terms becomes “don’t do that, it’s bad”, in general. people don’t necessarily even know or remember why it started – it becomes “the way things are”. it can become a sort of zoo exhibiting on its own: “look at me, not stimming in public, very politically correctly.”

further, it’s not easy (if not impossible) to tell if something’s performative, in practice. Lydia Brown mentions figuring out stims in adulthood that they didn’t do as a child – I think that’s enough. as they note, stimming is joyful, it’s regulatory (and many other useful things). i’m not willing to subscribe to a vague “you know it when you see it” set of social rules around something *that is one of the most healthy, empowering, self-regulating, joyous, fun things that we do as a community*. we need to be creating spaces for us to stim more, not less! as well as creating spaces and processes for people to reclaim what we do with our autistic bodies.

(an aside: i would add “bad stims” to that list as well. getting hit by a flailing arm can be worked around, traumatizing someone to the point of having PTSD, or worse, can not — and for what? one of us trying to get our needs met, and not being listened to, respected and worked with in a positive manner.)

here’s another thing: i understand Lydia’s need in context to call attention to affirm stimming as an adult as a conscious, deliberate decision. that’s 100% valid as well. i also refuse to quantify stimming that way. i have stims that i suppressed and/or redirected since i was a child, and reclaimed in adulthood. (i grew up in a “quiet hands, look at me when i talk to you” household.) hand-flapping in particular: i’d redirect my very stimmy hands into tapping, or drumming on things. for me, that meant that i was fidgety a lot, because while it’s possible to drum…a lot, that doesn’t always “fall between the cracks” in public any more than flapping does. so i hid. hid, and squirmed.

certain *ahem* unfair people can and will come off with a sort of “a-HA! NOT VALID!” accusation around the process of *reclaiming* stims, if not stimming in general. just like they do with anything they can get their grubby, ableist paws on, in order to try to negate our experiences. as Lydia notes:

“When those of us who choose to publicly and intentionally stim do so, we are not inauthentic or fake, but we are giving ourselves permission to enjoy bodily movement forms that are peculiarly (though of course not exclusively) autistic, and to incorporate them into our palate of expressive communication and self-regulation. Doing so for political reasons does not ignore that neurotypical and other non-autistic people will almost certainly misinterpret it, or attribute horrible ableist meanings to it, but rather, is a direct discursive challenge to that kind of ableism.

It is a political choice, because it is choosing to be openly and unapologetically autistic. Being neurodivergent in public, ever, is putting oneself at risk. And if we’re choosing to stim in public in a way we didn’t do intuitively earlier in life (or had deliberately beaten or ABA’d out of us, in some cases), we are of course aware of and assuming that risk. We talk about the concept of “dignity of risk” in self-advocacy for a reason.”

i’m in the “went through ABA, coercion and abuse” category. i didn’t “choose” shit, it got forcibly programmed out of me — or they tried to do so, for a time, and thankfully, i managed to hold onto enough of myself to not be fully moulded into compliance — and i *choose* to be politically engaged, at times, in public, as an autistic person, including stimming. (it’s also personally necessary, as part of my healing and reclamation process.) is it acceptable? respectable? no. it’s a form of self-advocacy and reclaiming of space in a deeply ableist, neurotypical society. someone has to do it — if we’re all about being respectable, we are calling for those of us who can be out publicly (by choice, necessity or both) into a neurodiversity lite <link> closet! this isn’t progress, it’s regression. we stim because we stim. again: that’s enough. (that said, as a brown, trans/queer, intermittently non-speaking, definitely not “table ready” Autistic person, I’m aware of my surroundings and the choices that I make — I hate suppressing stims, but I’ll do it if it comes down to that or risking my safety — but that’s *not* the same as “be respectable and don’t reclaim space as an Autistic person”.)

having been in and around the trenches of the trans community, as a publicly visible and out trans/queer/intersexed person, since the late 1990s? what respectability politics as an overarching rule, as opposed to a contextual strategy gets us is assimilationist, exclusionary nonsense like transmedicalism, *NOT* cooperative partnerships with allies. actual community-building work is usually done by self-advocates and community organizers, not apologists or hostile detractors. assimilationist approaches are a mistake and will come back to haunt us if we let this become the norm even more than it already is.

that all said — i believe in us! we’ll get there. stay strong, friends. ✊🏽

Figuring out sensory integration strategies as a working musician

(This may sound like I’m plugging Henny’s book — I’m just excited about getting some answers as to why rote task-shifting can be hard for me at times. That said, if you want to support her work, by all means, do so.)

One of the things I’m working on in my creative process is how playing music (as a stim) can get intertwined with playing music (as a creative mode of production, as well as a way of making a living).

This isn’t always easy to unpack! There’s a range of different things feeding into this — alexithymia, sensory regulation, visual and auditory thinking, as well as stimming and music-making.

Further, I’m both a pianist and a composer. Both of those creative processes are very closely tied to all of the above, as well as requiring a fair amount of fluid context-shifting, from “right-brained thinking” to “left-brained thinking” and back again, or put another way: shifting from auditory processing (the internal “image” of the music) to visual processing (the score) to textual processing (letter names for the notes). I can do all of those things, but there’s times where the shift isn’t fast enough to fit within an active production schedule.

There’s tools and methodologies to work with this, as it turns out. Which is a huge relief! The usual focus is either on standard music skills-building ones (which isn’t enough, becase it doesn’t account for our neurologies), or interventions (which can be harmful).

That’s why Henny doesn’t take students who are enrolled in ABA programs anymore. Not only is it traumatizing them (and can result in PTSD), it overrides their ability to make independent decisions, as well as giving no means to cognitively process sight-reading and performance.

In other words, ABA is about “cure“, as well as denying agency, in a very direct way, with frequently disasterous consequences.

What Henny is teaching are tools: this is how you connect music in your head to notes on a page, to playing those notes. For myself, I already have a musical process, but there are areas where I’m rusty, and I have challenges in relation to very small task-based shifts in context. From the looks of things, I don’t need admistered tools, I need the tools themselves. Which I got from her book, and as I move forward, am working through and figuring out on my own.

tools vs. “cures”

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. ✊🏽

autism diagnosis: deciding on pathways

trigger warnings: anti-neurodiversity, anti-self-advocacy, identity policing, ableism, anti-autistic nonsense

i’m writing this in the hopes that people won’t have to learn the “terrain” of autistic diagnosis and the Autistic community the hard way, which is mostly what i did (but with a lot of help from the self-advocacy and neurodiversity communities). while i am grateful for the efforts of self-advocates who got me through it all, it wasn’t the best of experiences — so much information! so many conflicts! it can be draining. anyway, here’s the show.

when I self-dx’d, I’d been in counter-cultural movements for decades. “accepting who you are unconditionally” is something i became aware of in my teens, and that i periodically refreshed throughout my life. (i’ve come out of a *lot* of closets.)

mostly what i needed to accept and embrace being autistic was information (especially from self-advocates as well as #ActuallyAutistic people who share similar multiple oppressions to mine), and a bit of a push.

so, self-diagnose? get diagnosed “officially”? both?

*if* you can “go through the official channels”, and *if* it’s going to get you something, sure. i did and i don’t regret it. it’s also an expensive and/or arduous, time-consuming process, in a lot of cases, but it can be paper in hand.

here’s some more things about community conflicts (and solutions), in the hopes to make things easier for whoever reads this, especially if you’re considering if you’re autistic, or are recently diagnosed (either self-dx or “officially”).

get away from the people who try to gatekeep who is and who isn’t autistic as quickly as possible, unless you have the stamina (a *lot* of stamina) to challenge or confront them. i’ve seen people become very overwhelmed in comments sections, because they tried to reason or argue with people that assert that self-dxing isn’t valid, that being diagnosed as an adult isn’t valid, or even (especially from some parents in “the autism community” — as in, parents and clinicians, most of whom aren’t autistic, and many of whom are cure-focused rather than self-advocacy and neurodiversity-focused) that you can’t be autistic if you mask your being autistic. this includes people who say “neurodiversity lite” things, but make the same assertions as anti-neurodiversity people do.

this is widely accepted as being false, both by people in the Autistic community, and by the standards bodies that publish the DSM and ICD – but they say it anyway.

simply put: they’re wrong. that corner of things is a “dumpster fire“, save yourself the stress and bother, if you can.

cynthia kim addresses this as well:

Adult ASD: Self-diagnosis or Professional Diagnosis?

Adult ASD: Moving Forward After Diagnosis

also, people who are against self-dx and adult diagnosis will claim that autistic people who are inclusive of *all* autistics, are doing that because they’re high-functioning. not only is that offensively anti-autistic, and anti-disability rights, it’s also ignorant of the work people have done, including autistic self-advocates who aren’t labeled as “high functioning”.

Decoding the High Functioning Label

Living My Disabled Life: My Story Is Mine to Tell Part 3

About The Film

instead of getting stuck in the drama of all that, read cynthia kim’s excellent “I Think I Might Be Autistic“, and read or watch the blogs and videos of self-advocates, such as Amy Sequenzia, Amethyst Schaber, Lydia Brown, Kieran Rose, and Neurodivergent Rebel. if you’re non-speaking to whichever degree, read this! as well as the book “Typed Words, Loud Voices“. If you’re looking for autistics of color, Morénike Giwa Onaiwu and Black Autist. if books are a good means of getting information for you, “Knowing Why“, “Loud Hands“, “All The Weight of Our Dreams“, and as mentioned previously, “Typed Words, Loud Voices” all are excellent introductions to the Autistic community, and are self-advocacy focused. lastly, familiarize yourself with the Autistic self-advocacy organizations, such as ASAN and AWNBN.

Self-dx and clinical dx

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.