Category Archives: self-dx

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.

life in the autvoid

TW: institutionalization, false imprisonment, pathologizing, school system, ableism, oppression olympics, “shiny” aspies

autvoid, n. the place in society where an autistic person, especially someone who has been marginalized or oppressed out of support and resources, lives. think “unmasking” (or not being able to mask) while living out in the world, but without a tangible diagnosis (of whichever sort), or the words to describe what you’re going through. can also refer to people who were assessed but not diagnosed, diagnosed but not told the results, or otherwise lacking in agency as an autistic person.

i’ve lived in the autvoid a lot. a vaguely-shaped form, buying groceries and getting “inexplicably” overwhelmed. melting down. stopped by a cop, and not able to say a single word. assessed in childhood, not told the results. a lot of experiences, not much in the way of answers. that was me for a long time.

a lot of us live there. 50-60%, by one account.

some of us live out in NT society, and suffer as a result.

many of us are undiagnosed, or misdiagnosed.

some of us are assessed and/or diagnosed, but were locked out of the details. or were assessed, told, and nothing else happened. “You’re autistic, I think, or whatever. Get back to class.”

some of us live at home, sometimes, or all the time. including in adulthood.

some of us are institutionalized, or in prison.

the autvoid is a place where the very large subaltern that makes up *most* of our community lives. this doesn’t discount or erase the lived experiences of those of us who are diagnosed! people seem to struggle with this, and to be honest, i’m not sure why. it seems disingenous. perhaps they’re used to getting what they want, or are insecure in themselves? (see this post from silent wave blog for a critique of this “anti-self-dx” nonsense.) using one experience to try to cancel out another smells to me of oppression olympics. as i keep saying, and will keep on saying: “we are all part of one spectrum“.

in my view, if you’re autistic, you’re autistic. if you don’t know, you’re still autistic. if you’re being oppressed as a result, you’re *definitely* autistic. “Autistic” with a capital “A”, even. you need — and deserve — support! we just haven’t found each other yet, due to a lack of accessible, useful resources.

here’s to being found. ✊🏽

Assessment is finished, like the first morn

*cues Yusuf*

let me preface this by saying: self-dx is as valid as ever, personally, culturally and economically. fuck off if you think otherwise.

i’m diagnosed “with” ASD now, as in officially. so if/when i need accommodations at work or school, i have something to point to.

the assessment process was sort of a nightmare (stress, unfamiliar building, new people), but I did it. it was very much on the clock, which for me, just underlines the limits of what a diagnosis represents. not in terms of its accuracy (as long as they know what they’re doing), but in terms of “how much can realistically be expected to get covered, given that time = money”. it also was stressful as hell, so “more time” isn’t necessarily a solution here, either. it was just the right amount of “oh, fuck” and “oh, good!”, given what can realistically be expected.

i think it’s really important to insist, if not demand, that your needs get met as much as possible, to whatever degree that’s possible. expect to be pushed back against, highly confused at times, and feeling like you’re being gaslit.

if you need accommodations for being partially or completely non-speaking: let them know in advance! i didn’t, and i wish i did.

also, the ability to bring someone along (if possible, it wasn’t for me personally) is important as well. let them know in advance about that, too.

the self-discovery (by whichever means) to diagnosis (by whichever means) process – self-dx, getting referrals, getting diagnosed (if that’s possible and desirable) – reminds me when i gender transitioned, in a way. trans people wind up with other diagnoses (yes, gender is a diagnosis), both false and accurate (but frequently false), just like autistic people. we get revolving doored for years, or decades, in both cases. this is finally getting better for trans folks (the present U.S. administration’s chicanery and corruption aside), is in process for enby folks, and still has a long ways to go for autistic folks, women and people of color especially. it’s not a fast, or easy, process, either way.

but it’s done! done is good. i’m “official”, so in situations where that *actually* matters, i can say “i’m official” and back it up. since i live in a country where the idea of believing someone at their word when they self-disclose isn’t always common, this is important. which is exactly why it’s total bullshit that it’s not available free of charge! also bullshit: it can affect access to some forms of health care. if you go this route, it’s important to know when and how to disclose: not everybody is friendly, not everybody has your best interests in mind.

lastly, and this is really important: anybody who thinks that autistic people who have significant daily support needs can’t self-advocate at all? that people who self-dx aren’t valid, and shouldn’t be welcomed into the Autistic community as equals? that autistic adults who mask, who struggle and try and fail and sometimes succeed in NT society, or succeed and fail over and over again, because the rules make no sense, aren’t autistic at all? fucking suck my shorts, you and your pathetic hate speech campaign that masquerades itself as concern. you’re simply wrong, and need to climb off your heavily entitled soapbox. “we are all part of one spectrum“.

ok, so i’m official. /whoop this chapter of life’s journey seems to be ending, so a new one can begin on its basis.

i think Dionne Farris sums up my feelings best here. listen to the tracks for the full feeling and sentiment.

Hello Morning, Now when does the fun begin?
Goodbye Morning, Sorry it had to end
But see I cried just a little too long
Now it’s time for me to be strong

Everything’s so crystal clear now
All I needed was time
Everything’s so crystal clear now
I’ve cleaned my mind

Community Organizing Beyond “Officially Diagnosed”

There needs to be a “misdiagnosed, undiagnosed and suppressed diagnosis” caucus of sorts. This is important at face value, but also because it dovetails into:

– Under-representation of women and trans people

– Under-representation of people of color

– Under-representation of working class and working poor people (because of cost + misdiagnosis)

– Under-representation (and contested representation) of adult autistics in general

This also impacts on the quality of (beneficial) research, as well as the tendency for research to focus on “cures” rather than social accommodation and support across the spectrum.

The lack of beneficial research + scare tactics = the dominant paradigm around autism, especially in the U.S. and parts of Europe (but not the UK, it seems). (Don’t @ me about Brexit, I know.)

This also requires having an org(s) or movement(s) to have a caucus in to begin with, though. There’s community-based orgs — https://www.aane.org/ comes to mind — but they’re few in number.

ASAN is focused on policy and lobbying, AWNBN is focused on support and resources. All of which are incredibly important, but there needs to be more.

As per usual, the “autism advocacy” groups are actively hostile to self-advocates in a lot of cases. There’s people working to rectify that – but they’re few (if not singular) in number.

Meanwhile, “zomg the vaccines!!!” seems to have gotten supplanted with “zomg, school shooters!!!!” and “zomg, neurodiversity is a cult!!!” <- actual things that actual people say, loudly and repeatedly

Our neurodivergent selves are right here. Feel free to talk with us anytime. Meanwhile, there’s a lot of work to do, and this should be part of it, I think. 💪🏽 ✊🏽 ❤️ Onward.

Quick update

I’ve been slow on posting for the past month because reasons, but here’s some things that I’m working on:

– Origins of ABA and its relation to LGBT conversion therapy

– The realities of being autistic in the U.S. school system

– The lack of diagnosis and subsequent public awareness of autistic women and people of color

– Shared realities and differences between the HSP and Autistic communities

– Lived experiences and realities of undiagnosed and diagnosis-suppressed autistics

There’s a bunch of content up there already, though. Feel free to have a look. 🙂 Thanks!