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spika , to actuallyautistic
@spika@neurodifferent.me avatar

After taking a bite of corn picked from the backyard which had a flavor and texture which was both unexpected and offensive, to the point where I could not swallow and had to immediately spit it out.... I'm reminded of how food was such a point of anxiety for me as a child, vegetables especially.

I hated eating apart from my parents as a child. My parents had endured enough dinnertime related meltdowns to know not to press when it came to new foods if they wanted to have a peaceful dinnertime, but other relatives and other people's parents were a nightmare. I never knew what seemingly nice adult was going to turn into a bully on me at dinnertime and try to force a vegetable and refuse to take 'no' for an answer. Even worse if there were peers who didn't have food aversions and were accustomed to rules like "you must try a bite of everything on your plate" who would join in with their peer pressure. I don't know how many meltdowns I had as a kid due to being afraid to eat a food an an adult taking it to be a power struggle.

It took me until well into my 20s to be able to expand my palate to include more vegetables than just raw bell peppers and celery, and even still.... I have a hard time considering most vegetables food because of days like today, when I bit into something and it wasn't quite right.

@actuallyautistic

servelan ,
@servelan@newsie.social avatar

@spika @actuallyautistic I got some of that when I was a kid, too; lots of handed-down rules that didn't make a bit of sense and were kind of abusive.

I wonder if what you're experiencing is sensory processing disorder...there are some foods I will not even try, and not a big veg fan, either. Some textures are gross, some colors...SPD is apparently built-in to according to a former counselor.

Gtmlosangeles , to actuallyautistic
@Gtmlosangeles@neurodifferent.me avatar

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.

@autistic[email protected] @actuallyautistic @allautistics

  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 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 in a manner distinct from a linear social chronology.
obrerx , to actuallyautistic
@obrerx@neurodifferent.me avatar

@100mountains @kkffoo @pathfinder @KaCi @actuallyautistic @allautistics @neurodivergence

Okay, I've decided I'm going to comment here.

In many parts of the world people in lower economic classes often can't access professional diagnoses. Even in the UK, as I understand from discussions, the health care system doesn't always provide health care diagnostics that are truly expert/competent in diagnosing autism, particularly in women and PoC, LGBTQ, etc.

So your approach is exclusionary and discriminatory against lower economic classes. I realize you may have reasons unique to your experience that leads you to suggest this approach, but it's not exactly supportive of the neurodiversity paradigm which is based upon principles of acceptance and inclusivity of diverse neurotypes.

Can you "tell" who is self-diagnosed or not? I don't think so. Self assessment takes back control from the medical establishment, and allows us to define ourselves without the imposed authority of a system that has historically been conceptually flawed in understanding autism and neurodivergence.

The self-assessed/self-diagnosed/self-identified are indeed

And I wasn't going to answer this because it seemed better to ignore it, but then I realized that many others may be reading here, and are perhaps new to these issues, and may need to see a rational answer to this, because they are processing their own thoughts and need information to understand neurodiversity concepts.

Did some editing. I tend to edit a lot, due to my neurodivergences.

obrerx OP ,
@obrerx@neurodifferent.me avatar

@Vincarsi @100mountains @kkffoo @pathfinder @KaCi @actuallyautistic @allautistics @neurodivergence

That cost would cut most people out of line for assessment. I hope this changes in the future.

It's strange when you consider that people who identify with a personality type, such as introversion, extroversion, or some of the Myers-Briggs types, or as a Highly Sensitive Personality, etc, can just read a list of traits and identify.

But which is very much neurodivergence but also a neurotype and personality type, requires autistics to pay 5000 to join the club they intrinsically and innately already belong to.

I spent years involved in the process of self-assessment. I approached it like a science, documenting in over 100 pages in my journal my traits, and carefully matching them to the DSM-5 criteria. I don't think everyone needs to follow that process, but it's how I approached it.

Then I spent quite a bit of money to get a formal assessment.

Funny, my ADHD assessment from 23 years before only took 1 hour and $85, and the assessor was a psychiatrist who specialized in ADHD. . Things were different then. Simpler.

Talk about gate-keeping by the medical systems! It just costs more money than most autistics have to open that door.

Gtmlosangeles , (edited ) to actuallyautistic
@Gtmlosangeles@neurodifferent.me avatar

@actuallyautistic @autisticbookclub @autistic[email protected] 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 our valuable community history. More of that, always, please!

I hate reading fellow autistics criticizing the ways that other autistics are using hashtags or groups as a way to connect. Less of that, boo!

By the way, "I use this because I 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".

benx , to actuallyautistic
@benx@kolektiva.social avatar

Just started watching As We See It.

Finding it incredibly relatable.

It actually made me cry a little with how relatable a lot of the struggles the characters face are for me.

@actuallyautistic

fictionalbutnot , (edited ) to actuallyautistic
@fictionalbutnot@mas.to avatar

I tend to avoid social media. I don't even really know how to use it; but when I'm on here, I see that whole "community" thing that I'm not very familiar with.
Like people getting support when they're down and all that.
Sometimes I try to imagine
myself getting that.

"You are a great person."
"You are worthy of love."
etc.

But if it were me, I know it would just feel empty. How could any of you possibly know me?

This can't be just me, right?

@actuallyautistic

fictionalbutnot OP ,
@fictionalbutnot@mas.to avatar

@autism101 @actuallyautistic

I'd say I know myself pretty well, I think my diagnosis was more for "there are other people like you" than "this is what you are"
And I'd be happy to settle for much less than to truly know a person.
I'd like to just have someone to have an actual conversation with once-in-a-while.
So, thanks for responding. I appreciate it.

InayaShujaat , to autisticadvocacy
@InayaShujaat@paktodon.asia avatar

Dear :

Take a look at this absolute piece of shit. Using the word (which I’m not) like a .

his fucking bigoted ass.

@autisticadvocacy @autismsupsoc @neurodiversity

ratcatcher , to random
@ratcatcher@neurodifferent.me avatar

For anyone having issues with the hashtag, there is also and @allautistics (the latter being a recently created group that you can follow and post to).

They are intended for anyone who is (or thinks they might be) autistic (formally or self-diagnosed).

PeteLittle1970 ,
@PeteLittle1970@neurodifferent.me avatar

@26pglt @allautistics @actuallyautistic

Interesting conversation on and hashtags.

Thank you. I'll try and remember to use the new tags in my posts.

Likewise I always assumed the ActuallyAutistic tag was all encompassing and for formal as well as Self-DX and was created to separate posts from the "Autism Moms" using or in their posts on Twitter/X.

However good points have been raised and taken on board. I'll certainly use the new tags in combination with the old to hopefully get the message across that it's for all of us, formal or otherwise.

obrerx , (edited ) to actuallyautistic
@obrerx@neurodifferent.me avatar

@allautistics
@actuallyautistic

I'm gonna ramble a bit. I usually try to be coherent, and take my time, but I don't even know where I'm going here just yet.

There are assumptions I see in current Mastodon discussions that are misleading or even wrong about so-called "late diagnosed".

One is that those who weren't screened as children must not be "very autistic", and that these late diagnosed persons assume superiority and higher status, and then dominate spaces and talk over the early diagnosed.

Trying to get a sense of this, because I'm very late diagnosed. No doubt there is some validity to this point for some. I haven't seen it, but that doesn't mean it isn't there.

But I will say that some of these "takes" are very much like the toxic views of the "autism parents" on Twitter, who think adult autistics are all "high functioning" or not autistic at all, just people who are frauds and wannabes.

Having said that, being neurodivergent isn't new to me. I knew I was different in my early teens but saw myself as having a very different "consciousness" than others, rather than a different neurology (long story). And I was dx'd as ADHD 23 years ago, and self-diagnosed as autistic 8 years ago, and then received a formal diagnosis of ASD about 2 years ago. So is that "newly diagnosed"? Lol. I've lived the autistic life longer than most on the planet at this point. I'm hardly uneducated in the topic.

So I've known about my differences for a long, long time. ADHD is anything but "new" to me.

As to autism, I think it will always be "new" to me, and yet it will always be something I've lived with all of my life. And I've been alive for awhile.

Included either directly or by implication in some of the comments I've read is the pathologizing of autism, and separating the autistic community into severity levels, a concept that is clumsy and inaccurate, and often results in withholding assistance to those who are perceived as "mildly" autistic or underestimating and infantilizing those seen as "severe".

And it also misses the fact that people who grew up before 1980 (and especially before 1970 or 1960) would not likely be screened as autistic, and instead could be treated as a "terrible, strange, misbehaved child" with resulting parental neglect and abuse (raises hand), or misdiagnosed as any of a plethora of other conditions including schizophrenia (raises hand) or intellectual disability.

They might be hospitalized as needing in-patient psychiatric care (raises hand).

They might be terrorized by siblings (as in fearing for my life in repeated, prolonged, and constant attacks) and left to fend for themselves leading to lifelong trauma and all the self-esteem and others traits of PTSD and c-PTSD (raises hand).

Undiagnosed autistics can be treated with a high degree of neglect, misinterpretation, leading to severe estrangement from parents, and outright physical abuse by parents and siblings.

My mother was autistic (I'm quite certain). My brother was autistic (quite certain). My grandmother was institutionalized and I think that was autism.

But no one knew about autism when my grandmother and mother were born. My mother was delayed in speaking, potty training, tying shoelaces, delayed in learning to read. Because of her differences she was horribly abused by her aunt who raised her.

Oh but she was undiagnosed so she must not have been very autistic. Right?

She had no friends throughout her shortened life, although she managed to do well in college, and received a masters in family counseling from CalTech in her 40s. She spent most of her time reading, sitting in bed at night, when she wasn't teaching "educationally handicapped" children (that was the term in those days... so interesting that she chose that as her career).

She died by suicide when I was 26. I gave her CPR at 3 AM, and I'll never fucking forget those staring, dead eyes. Fuck, fuck, fuck.

That's my family life.

This is part one. Part 2 follows.

Readawaytherain , to bookstodon

This diary of autistic teen Dara McAnulty chronicles a year in his life in Northern Ireland, focussing on nature outings with his family and his naturalistic observations close to home.

Initially I felt like not enough was happening, the writing was too descriptive and at the same time too distant and repetitive. But somewhere along the way Dara's writing became a sort of comfort blanket, perfect for reading right before bed. I really enjoyed reading about Dara's passion for nature and I found myself becoming more observant on my own hikes because of it. What I maybe loved even more was the way Dara writes about his family; it is clear how much they all love each other.

@bookstodon

Richard_Littler , to actuallyautistic
@Richard_Littler@mastodon.social avatar

The binge continues unabated. These are some of the CDs I listened to (a lot) in the 90s. They're almost tame compared with some of his other works, e.g., Dance Nos 1-5, Music In 12 Parts, and the operas, which some find a bit challenging. There's something about his intense, repetitive loops that suggests autistic stimming and I'd be interested to know if the music of Glass (and other minimalist composers) resonates with other autistic people.
@actuallyautistic

Richard_Littler OP ,
@Richard_Littler@mastodon.social avatar

Just a quick follow-up to this. Somebody on the bird site reminded me that part of the libretto for Philip Glass' opera 'Einstein on the Beach' (which, even though it's 4 hours long, I have listened to 4 times this week) was written by a 13-year old autistic kid called Christopher Knowles. Now I know why I'm faintly obsessed with the texts, which repeat & repeat & repeat (& repeat)...
@actuallyautistic

Firyar , to random
@Firyar@autistics.life avatar

Yesterday was my first bigger "party" since self-diagnosis. It was a work event. After 2h, I was overloaded and in danger of getting a migraine. Could prevent with sugary drinks. After 4h, I got cranky but my ride wanted to go home, too.
Today, I have a social hungover. Luckily, we got the day off.
I am glad that I went, but the next time I try to recruit more of "my" people because everyone sticks to their team mates there, not so much mingling. 1/2

Firyar OP ,
@Firyar@autistics.life avatar

In the past, I would have been angry with myself for getting almost sick and being so overloaded. Now I know this is because of my , because of how my brain is, that my senses are not deprived like with neurotypical people. It's pretty wild that they enjoy talking while loud music is played simultaneously and the surrounding is so busy.
(I was a bit ashamed of not washing my hands with soap, but its smell almost made me vomit. Sometimes it's small things, too.) 2/2

thequirkybraincoach , to actuallyautistic
@thequirkybraincoach@neurodifferent.me avatar

Want to know how I prepared to influence my sensory needs when trekking to Everest Base Camp?

Read how I worked out my needs, influenced what I can influence, and understood how this could help me - and how you might be able to do some of this stuff for yourself if/when you want to travel!

https://thequirkybrain.coach/how-i-prepared-to-meet-my-sensory-needs-for-an-amazing-trip-of-a-life-time/

@actuallyautistic

PsychTink , to actuallyautistic

"constant fighting with our own sense of identity causes further psychological distress...

"Instead of asking “what’s wrong w/ me?” We need to shift discourse over to “what happened to me?”. It’s vital that psychological distress be placed in the context of one’s environment&
experiences of the complex power dynamics within them."

@audhd @actuallyautistic @autisticadvocacy
Thanks for your work @DivergentDumpsterPhoenix https://emergentdivergence.com/2023/02/17/power-dynamics-and-mental-health-neurofuturist-discourse-of-mental-health/

100mountains , to random
@100mountains@mastodon.social avatar

do other autistic people exist here?

DivergentDumpsterPhoenix , to actuallyautistic
@DivergentDumpsterPhoenix@disabled.social avatar

When you find the right book, it can be a revelatory experience for the reader. This is why it was so difficult for me when I went through a long period of being unable to focus on reading.

I felt lost without my books.

@actuallyautistic @autisticadvocacy @bookstodon

iridella , to actuallyautistic
@iridella@neurodifferent.me avatar

Another book on , "Autism and Asperger syndrome in adults", by Dr Luke Beardon. I had seen him interviewed in a BBC programme on autism and was curious to read some of his work. The book is short and easy to read, and it's written as a dialogue with the autistic reader, discussing things that the autistic person should consider when choosing where to study at uni, where to work, whether to disclose their diagnosis (which he calls "identification", and I love that) etc. It's full of examples from the real life of autistic people and shows how amazing they can be. It's an overview based firmly on the social model, so doesn't go in depth, and it's largely uplifting and provides some practical guidance.
@bookstodon @actuallyautistic

lobocode , to random
@lobocode@hachyderm.io avatar

Hello everyone, how is the law structured for individuals with autism in your country? Are there specific rights or provisions? Please, can you discuss them? And, where are you from?

grammaticus , to actuallyautistic
@grammaticus@nerdculture.de avatar

In this week's post on the blog I offer a number of tips on the subject of , in and a few in - all created and hosted by folks.

Please let me know of other podcasts that you've found helpful and that should be on this list - I'll be updating it from time to time with new links.

https://grammaticus.blog/2023/08/30/listening-tips-autism/

@actuallyautistic

DivergentDumpsterPhoenix , to actuallyautistic
@DivergentDumpsterPhoenix@disabled.social avatar

If there were no barriers, and you had unlimited resources. What one thing would you do?

I would start an academic institution dedicated to the study and advancement of the neurodiversity paradigm and movement.

@actuallyautistic @autisticadvocacy

iridella , to bookstodon
@iridella@neurodifferent.me avatar

Neurotribes, by Steve Silverman. Amazing book, it gave context to so many things I have read about autism, misconceptions, contradictions etc. and how we are where we are. It's a hard read because it describes how autistic children were treated (and adults ignored) until not so long ago, but I would recommend it to anyone who wants to know more about autism. Note it focusses exclusively on North America and (parts of) Europe. @bookstodon

DivergentDumpsterPhoenix , to actuallyautistic
@DivergentDumpsterPhoenix@disabled.social avatar

Two things to understand about harm-reduction:

  1. Harm-reduction does not make something "safe".

  2. Harm-reduction is only effective when both the professional and service user have a good understanding of each other.

If either of these points are misunderstood, the harm will not be reduced.

https://emergentdivergence.com/2023/08/28/creating-autistic-suffering-camhs-advise-safe-cutting-for-autistic-children/

ND Social Care & Family Services

@actuallyautistic @autisticadvocacy

youronlyone , to actuallyautistic
@youronlyone@c.im avatar

“Autistic Masking Is A Survival Mechanism Until It’s A Threat To Survival”

“It’s the environments we move in that need to change urgently”

A good read.

https://justinel999.medium.com/people-dont-know-i-m-autistic-but-i-m-not-masking-aa84a6c7c07a

@youronlyone

@actuallyautistic @actuallyautistics @autistics

youronlyone , to actuallyautistic
@youronlyone@c.im avatar

So, this is what's happening to me:

It describes it as:
“Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.” ~Raymaker et al, 2020

Typically the Autistic person in question will still have multiple demands in their life that require cognitive resources, despite having little to no resources left to give. Life goes on, as they say.

Read the rest here: https://emergentdivergence.com/2023/05/12/creating-autistic-suffering-what-is-atypical-burnout/

Hat tip to: @emergentdivergence.bsky.social from the network.

What do you think? Anyone else?

@youronlyone

@actuallyautistic @actuallyautistics @autistics

Private
CuriousMagpie ,
@CuriousMagpie@mastodon.social avatar

@zenforyen @actuallyautistic Here's a way to think about

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