If you have some of these symptoms or conditions but feel not believed you might want to connect to us
#EDS #HSD #SymptomaticHypermobility #JH #neurodivergence #Autism #ADHD #Dyspraxia #Tourettes #IBS #Fatigue #fibro #allergies #Palpitations #anxiety
Learn how to disable your car horn in your make and model *before* it jams and blares non-stop at maximum volume, even with the engine *off*.
That just happened to us. 😱 Autistic nightmare!
Luckily, we had earplugs and someone we could call for advice, but we were overwhelmed by the noise and anxiety about neighbours, and knew nothing about cars, so it still took us a while to figure it out and stop it.
omg. I now.
I am hopelessly and comically mind-blind 🤣 yet I have absolutely no issues attuning with clients in session. I've had clients express shock that I appear to have "read their minds”.
Yet, repeatedly, my partner has to remind me that “'People' don't think like that!”
Very long-winded, autistic will-kick-the-breath-from-your-lungs sentence coming up…
@onisillos because #Autistic is mostly used by people talking about autistic people, not by autistic people themselves. That used to be a big issue on Twitter. That's why the autistic community started using #ActuallyAutistic to communicate among themselves (doesn't matter if self-diagnosed etc, it was in contrast to people who talked over us). Recently though this has been seen as possibly unintentionally excluding and tags like #AutisticMe and #AllAutistics are sometimes used in a similar manner to not suggest exclusion.
There are actually three hashtags and groups now:
The most important thing (as you mention) is to be welcoming to the newly (self or formally) diagnosed and the enquirers. As long as some people are following each of the above groups and hashtags and can respond to those people, I don't necessarily think the duplication matters that much.
It will probably (again as you said) shake out over time.
so, we have two different groups now. @actuallyautistic and @firstname.lastname@example.org. I understand that not all autistic people were there when the discussion took place, that resulted in the #ActuallyAutistic hashtag.
In short: A lot of NTparents took over the discussion and steered it in a direction that was toxic to autistic people themselves, talking over them, not with them in a massively ableist way. Promoting harmful stuff like ABA and the like. A lot of that took place on Twitter. Hence the tag to make sure we speak to each other, not to people that want to help us eradicate the autism from ourselves or any such nonsense.
To new people it sounds a bit exclusive though. Hence the #AllAutistics hashtag, that plopped up. ActuallyAutistic is meant to be inclusive of all autistics, regardless whether they have a diagnose or whether they know for sure. As long as they are in it for themselves. And is also fine for people that want info and learn directly from the horses mouth, cus they have autistic loved ones, kids etc. (many blood related people are some kind of neurodivergent too, anyways, whether they know it or not). it says "actually" too exclude people that would be disrespectful towards Autstic people. That's all. But it's understandable that it does sound exclusive to some, without explanation. The new people are in that vulnerable phase where they question themselves a lot. Am I really autistic or am I just an imposter. We all had this phase and it can take years and maybe it never ends. I still have these moments of" Ohh whow, I actually have this trait also. It just looks different in me". Well . It always looks different. Cus we aren't all white males with stereotype autism and its highly individualized.There's a ton of autistic people running around that aren't diagnosed and probably never will be. Your chance at being diagnosed as a woman is maybe one in four, depending on where you live, your status, your skin color, your traits. Some traits are more often leading to diagnose than others. Imposter syndrome is the norm not the exception. That's why we often hear" if you wonder whether you are autistic or not, you most probably are". NT rarely wonder about this. And we've all been through this stage. And BTW no one cares if you change your mind or if you're insecure. It's absolutely fine. You're invited.
So. I think we should have one. having two is inconvenient. And most people still hang out in the ActuallyAutistic- one. So either you all feel invited or we think of a name, that includes both, the history and the new people that have arrived. Just sayin'. I know it's probably gonna solve itself by one of them attracting more people and then being the remaining one, but I just wanted to repeat about the history and I don't want new people to get confused over this. Just so you know: There was no disagreement. It's just a question of history moving on and flow of information from old to new not always being perfect. If we need a change of defining terminology that's fine, but let's not get confused or feel divided ok?
Maybe it's ok. to have two, maybe the AllAutistics helps find people that are in the same state of finding out. Whatever helps is fine. I'm just writing this out so no one has to feel confused or not welcome. And BTW, there is a reason why people write hashtags in CamelBack., that's much more readable to screenreaders. Love to you all.
Perhaps this is interesting, or informative, to those of us who harbour the 'special interests' (most of us?) for which we are (justly?) famous?
Reposting this with hashtags and groups. Sorry if you are seeing it for the third or fourth time:
I have now (reluctantly) migrated my @email@example.com account to this one.
Unfortunately (probably due to the current technical issues with neurodifferent.me), my followers list hasn't migrated so I need to ask everyone to follow me again. Sorry about that.
So if you followed me before, please follow me again. And if you didn't follow me before, by all means do so.
Pretty please 😊
I have never set out to solicit followers on Mastodon, but here's the thing:
Given all of the unpleasantness that seems to be floating around at the moment, I may have to take some time out from following and posting to the hashtags and groups listed below.
So if you know me and enjoy chatting to me online, and don't already follow me, you may wish to consider doing so. If I recognise you, I'll follow you back (if I'm not already following you).
My other accounts are:
Regarding "conflict" as an element of the human social world, and the prevailing modern taste for it, even the praising of it:
All I have to do is read the daily news to see how many people there are in the world, most of whom are #neurotypical persons, who seem to like conflict.
Just read the headlines of any news journal.
Just look at what we're doing to the planet.
Just look at what humans do to other humans.
So, conflict is typical.
Others may differ.
Oh, that doesn't mean I won't fight back when people come at me. It doesn't mean I won't defend myself.
That doesn't mean you want to deal with me once you provoke me past a certain point.
But that's not what I want for my life. I want to get my pulse rate to a calm state. I want to have a healthy life. I want to calm the agitation. I want to get my amygdala to relax.
Because I have a very reactive @actuallyautistic amygdala... and I see everything, feel everything.
Thanks for reading.
The idea of searching a hashtag to find other autistics (hashtags like #actuallyautistic, or even just #autistic) definitely exists on twitter, but more common is following the large accounts as a way of keeping in touch.
It's all about following a couple dozen mega accounts to find discussions. Even then it's mostly short comments. People will often post big lists of "who to follow" within the autistic community. Obviously the majority of people won't even be on those lists. In this way some autistics become mini-celebrities. Everyone else is a follower.
Some more or less ignore this, to the extent possible, and form their own little circles of friendships. I tended to do that.
All of this is much more reinforced with the changes made by Musk.
So this more horizontal way of relating on Mastodon is something to treasure. It doesn't mean the mega-accounts won't make their way here, but they don't get the same attention here.
Searching out interesting posts using hashtags is far more directly democratic and and socially horizontal, and even someone who has no followers at all can post something and be noticed.
This, my friends, is a precious thing. And this is why the use of tags and who gets to use them has meaning.
The term “self-diagnosed” developed wide acceptance and use prior to my realization that I am autistic. I honor and value the history of my communities of autistics by understanding the meaning being communicated by that term. I do not try to change anyone’s use of that term, but I do not use it myself. I share this here in case others have similar ideas or want to discuss.
I strongly believe that no one is entitled to know any diagnosis of another. That information can be shared freely by the person diagnosed but should never be required. This goes for autism, mental health conditions, pregnancy, HIV infection, and even COVID infection.
Diagnoses are tied to medical, psychiatric, and educational institutions that perpetuate racism, homophobia, transphobia, ableism, classism, eugenics, and more. The existence of well-meaning professionals and the benefits of sharing commonly understood categorizations do not eliminate the danger that can be associated with knowledge if diagnoses. Thus, every individual should have full control over who has access to that knowledge, in order to maintain agency over their own lives.
It is my best guess that I would meet the current diagnostic criteria for ASD. If I were to say that I am self-diagnosed, that would be what I mean. But I do not say that. Now that I understand what autism is, I do not care whether I meet the criteria for ASD. I simply communicate that I am autistic. How others interpret that communication is up to them.
In light of recent events here, it's clear Mastodon is a wild social world for me.
It's not as toxic as twitter, nor as hierarchical, nor as profit driven.
But it can be toxic here. It can be confusing. It can be triggering. It is in some ways like other social media including twitter.
It IS amazingly easy to be misunderstood here. To be misread.
And I've been misread my entire life. I've experienced trauma as an autistic child. PTSD. c-PTSD. I don't deal with toxicity well.
Too much conflict is confusing to me. Too many different personalities all chiming in at once confuses me.
[Note to self: it's not a crime to explain the history of a hashtag.]
If your journey is currently leading to the view that you yourself are NT, you may wish to follow and use the hashtags:
If you are moving towards the view that you yourself are autistic, and/or in other ways ND, you may wish to follow:
and these groups:
If that results in too much stuff in your home feed, you can always stop following some of them later.
I like the idea of definitions. Exploring autism has, for me, involved diving deeply into several definitions of several terms. The meanings to me have changed a lot in this process and may change again in the future. I have drawn from lots of sources and also from internal reflection.
For now, I wanted to share a partial list (it started out as two words, but then autism). I would love to hear any thoughts about any of these, including community history and personal experience. TIA.
1. Allistic – not autistic.
2. Autism Spectrum Disorder – a diagnosis.
3. Autistic – a neurotype categorization referring to identification, not diagnosis, for people who rely far more heavily on building out from specific experience than adopting in from social contact than allistics.
4. Certification – a communication from a socially dominant institution that an individual has demonstrated through their behavior the likelihood of providing specific services to others in a manner likely to benefit those with power and privilege.
5. Cognition – Processing of external and internal stimuli into frameworks that may be associated with behavior and/or internal recognition.
6. Communication – behavior by one sentient being intended to alter the cognition and/or behavior of another.
7. Development – a prescribed timeline of behaviors that dominant social institutions determine to be a desirable optimal outcome.
8. Diagnosis – the categorization made by one or more individuals, all certified to practice education and/or medicine, that another individual fits into a specific framework for interaction and access to resources.
9. Education, or “Formal” Education – the institutional framework for sorting humans into categories based on the perceived likelihood that an individual will grow to benefit those with power and privilege.
10. Functional label – an institutional (diagnostic) categorization of individuals for the sole purpose of allocating different sets of resources for different categories.
11. Gifted – the subset within any neurotype of those certified as having high intelligence.
12. Identification – an internal transition that a person experiences: from not knowing the category of something or someone to being able to place it or them into a category.
13. Identity – the label a coherence of cognition chooses to describe themself or an aspect of themself, along with the meaning that individual intends to be associated with the label.
14. Intelligence – a measure of the ability of an individual to display behavior leading to the perception that the person will contribute to those with power and privilege more through cognitive than through physical labor.
15. Neurofabulous – the identity label intended to mean a person with distinctly individualized cognition who celebrates and warmly embraces that cognition.
16. Property – a mutual social convention guiding cognition about how different individuals may use something.
17. Resources – material items and/or behavior, whether or not categorized as property.
18. Self-diagnosis – an identity label that borrows reputational social credit from the term “diagnosis”, in that it is intended to convey two ideas: 1) I made the decision about my category myself, and 2) my decision is equally as valid as a decision made by individuals certified to practice education and/or medicine.
19. Support – natural and mutually beneficial interaction among people that would flow comfortably and in abundance but for the social definitions of property that direct interactions to benefit those with power and privilege.
20. Timequeer – a neurotype categorization referring to identity, not diagnosis, for people who experience the flow and perception of time and development in a manner distinct from a linear social chronology.
The main thrust of the discussion was about people who had recently realised they were autistic, or thought they might be, wondering if it was OK to use certain hashtags/groups.
As long as there are at least a few of us following each of the hashtags and groups, we will see the posts from newbies and can welcome, clarify and point them at the other hashtags/groups.
Fortunately, hashtags are non-rival. The use of one hashtag imposes no barrier or additional cost on the use of another hashtag. There is no scarcity in hashtag space. And in the end, multiplicity is one of the features of our community I value most highly.
#ActuallyAutistic #AllAutistics #AutisticMe
I did give complete details of what has happened in the past on Twitter which included some folks coming up with an alternative tag, #allautistics. This is part of the history on twitter. It's information. It wasn't a suggestion that we should no longer use #actuallyautistic. I use the tag constantly.
I suggested that we need to constantly explain that the tag is inclusive.
I love learning about what fellow autistics experience when using hashtags or groups as a way to connect and share. I also love hearing about or valuable community history. More of that, always, please!
I hate reading fellow autistics criticizing the ways that other autistics using hashtags or groups as a way to connect. Less of that, boo!
By the way, "I use this becuase like this and not that" or "when I use that I am uncomfortable about what it implies to me" - those are not criticisms. Criticisms are "It will work best if autistics only use this" or "autistics should not use that".
"Greta Thunberg Could Face Jail Term After Second Blockade of Swedish Oil Port"
"The Swedish climate activist has been charged for a second time for failing to obey police orders."
(See the linked article at the bottom.)
Something I posted somewhere else:
Greta’s perceptive way of seeing the world in very literal, stark terms allows her to clearly see the climate crisis as an emergency, while so many others view climate change as an abstraction. To her it’s not an abstract threat, it’s an evident reality. That’s why she said this:
"Adults keep saying: “We owe it to the young people to give them hope.” But I don’t want your hope. I don’t want you to be hopeful. I want you to panic. I want you to feel the fear I feel every day. And then I want you to act."
"I want you to act as you would in a crisis. I want you to act as if the house is on fire. Because it is."
And she’s right. She began her activism all alone, sitting in front of the Swedish Parliament building holding a sign, while refusing to go to school. She thought school was impossible to attend while the planet was burning. She needed to voice this massive threat to young people. She began the school strike that grew to include other young people.
Yes, she is a hero.
I quite often experience this sort of "jamais vu" 'blanking'. The article claims it's quite rare...? Anyone else?
I think of it this way:
From the moment a person is born (maybe even before), they learn. How to interpret what they see, hear and feel; how to wiggle their toes; then later, social behaviours. We excel at some of these learned behaviours but find others difficult.
So, if it's a learned behaviour that you are OK with, that seems to align with who you are, that works and causes you no distress then it's a healthy learned behaviour.
If it requires a lot of effort, makes you feel that you are lying and/or hiding your true self, threatens your mental and emotional wellbeing, but works to some extent (in terms of fitting in, avoiding alienation or, at times, just for personal safety) then it's masking.
Now I gotta add more tags to my autistic hashtag tab and it always takes me a while to remember how to get to that bit of the app *shakes fist at sky*
I think I missed asking autistics off it anyway.
Am I missing any good ones? #AskingAutistics
(I wish the suggested tags were in camel type so I don't have to type the whole thing out every time.)
It wasn't a rush to a new tag.
When I 1st came here I assumed #ActuallyAutistic was gatekeeping & didn't interact until I saw the tag explained. Most weeks since I've seen posts assuming the same.
But like many of us I'm fond of the AA tag, plus change is... unappealing.
Then I saw a couple of posts under #AllAutistics & got quite anxious we'd go through the pain of change but end up with another problematic tag.
So I thought I'd better say something.
It's not about who invented a tag but finding a shared tag that doesn't need exposition.
I don't want to be a jerk but the meaning isn't "clear enough" as there's a viable 2nd interpretation.
AllAutistics seems clear juxtaposed against AcutallyAutistic, but if you take away that context & put it in a random post:
Withering inside when someone laughs loudly. #AllAutistics
It could EASILY look like over-generalising.
I didn't actually come up with the #AllAutistics tag, but I think the meaning is clear enough: all autistics can use this tag.
I don't think the idea of anyone claiming to speak on behalf of anyone else has any relevance to the use of the hashtag and/or group.
The #ActuallyAutistic tag is problematic as we CONSTANTLY have to explain that it's not intended as gatekeeping.
So I'm up for us all rallying around a clearer tag.
However, people posting their experiences tagged with #AllAutistics are going to get others jumping in to say: You don't speak for ALL autistics!!
I fear it's a case of repeating the same ambiguity mistake twice.
Which is ironic when our bag is supposed to be a love of specificity!
I've set up a brand new account on a different instance tonight (@firstname.lastname@example.org) just in case anything happens to this place.
I have only been here for the past six months, but I do appreciate everyone that has followed me since the beginning.
If I have to fully migrate over there, I'm already prepared to start the process of doing so.
I realize I am old and it’s pathetic that I’m still so wound up in my family, and there are terrible disasters all over the planet and just about everyone has more pressing problems than mine.
But it’s part of my ActuallyAutistic #AllAutistics that I tell the truth (as dumb as it is) to people I care about, and I care about you.
I’m thinking about how, when I was masking, I was basing everything on sitcoms, and how I related to my family like a sitcom family, like “oh, they give me a hard time, but I know they love me”… and how that whole facade crumbled when I found out that they’d been alerted that I was #ActuallyAutistic #AllAutistics since my childhood, and refused to take it seriously, leaving the burden to me, a bomb waiting to explode my future.
It’s also on my mind with my stepfather’s recent death; how it’s been driven into my head that “family is everything, family is all that matters”, and yet… none of my mom’s sisters have been bothered to come support her. She postponed his memorial to late September, a month after his death, to give her sisters time to make plans to come… and yet, they’re not coming. At all.
It just feels like everything I’ve been taught about “family” was just hollow bullshit to keep my sister and I in a constant state of obligation, always trying to “earn” our place in this family.
It was all just empty words the whole time, and we were the dummies who believed it.
Still having trouble with Rhode Island’s website, but this Spectrum article from 2011 explains what RI intended to do with its registry: https://www.spectrumnews.org/news/rhode-island-plans-statewide-registry-for-autism-research/
They wanted to register every Autistic person in the state – ‘an estimated 2,500 children from 1st grade through high school, as well as preschoolers in early intervention programs and adults with autism [sic]’
Despite mentioning adults here, there’s only one other mention in the article, when one of there researchers refers to ‘the support and services her kid needs’, the kid being, in the article’s words, her ‘adult son with autism [sic]’
They also intended to use ADOS, a very child-oriented diagnostic tool – it’s the one that uses the picture book ‘Tuesday’
‘Less than half a million dollars would enable the group to build a registry database and hire a three-person team to begin recruiting participants’, Daniel Dickstein of Brown University is reported as having said
The research implications of US state autism registries (as mentioned in @dramypsyd’s petition) are hinted at in some of these, e.g.
‘to inform the planning of service delivery to children with autism and their families and to facilitate autism research’ (Delaware)
‘To identify factors that might be associated with birth defects [including being Autistic!]’ (Indiana)
‘they are instrumental in establishing significant risk factors, potential causal factors, and cellular-level research results’ (New Jersey)
The third is from this linked paper (PDF), which also helpfully discusses the positions of all eight states, including a comparison table (attached): https://www.nj.gov/health/fhs/autism/documents/2016%20overview%20of%20States%20Autism%20Registries%20Brief.pdf
US state registries of Autistics
(CW: severely pathologising language)
Rhode Island: [health.ri.gov site down currently]
West Virginia: https://www.marshall.edu/atc/wvasd-registry/
➡️ That ACLU petition again!! ➡️ https://www.change.org/p/tell-the-aclu-to-fight-mandatory-autism-databases
If you are Autistic, living in one of the following US states, and you go to a doctor, you are liable to be put on a state register and may be involved in medical research without your consent
• New Hampshire
• New Jersey
• North Dakota
• Rhode Island
• West Virginia
Petition the American Civil Liberties Union to challenge the laws that require Autistic people to be registered: https://www.change.org/p/tell-the-aclu-to-fight-mandatory-autism-databases
Thanks to @yourautisticlife for drawing my attention to this
To add another point about the history, for awhile on Twitter some #autistics began to use an alternate tag:
This was intended to correct the ambiguities of the #actuallyautistic tag, so that it was more clear that it wasn't about gatekeeping.
This, shared by @jbenjamint, should be good news for Scottish Autistics :audhd:
I hope the Scottish APOs (Autistic People’s Organisations) below will have access to the fund
• Autism Understanding Scotland, https://www.autismunderstanding.scot
• Autistic Mutual Aid Society Edinburgh (AMASE), @amase
• Autistic Rights Group Highland (ARGH), https://arghighland.co.uk
• Scottish Ethnic Minority Autistics (SEMA), https://sema.scot
(If any of the APOs besides AMASE has a fediverse presence, I’d love to know! Also please let me know if there are any APOs I don’t know about. Edit: I’ve removed Diversified from the list as they work with under-18s, and this fund is specifically for people who are 18 and over)