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?
I'd say I know myself pretty well, I think my #autism 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.
I'm gonna ramble a bit. I usually try to be coherent, and take my time, but I just don't even know where I'm going here just yet.
There are assumptions I see in current Mastodon #autism 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.
People growing up before the 2000 were not screened for autism. It really depends of the country. Even in the western world, a lot of countries still struggle to identify autism if the kid has no intellectual impairment. For adults, it's worse.
Even the most innovative country don't know how to deal with autism. It would be funny if it wasn't a life treat. It's sad because people have to trick the system to get help and accomodations.
This is written to the #autistic community, as well as to the non-autistics among us. My apologies if this offends, I'm just trying to be informative to anyone and everyone about this topic.
I'm just gonna say to everyone that the "actuallyautistic" tag initially strikes many #autistics as gatekeeping or exclusionary. This happens all the time.
There's no way for anyone to know intuitively or by inference that it is actually intended to protect and include all autistics, whether self-self-assessed, professionally assessed, and regardless of so-called "levels" of autism.
At first glance, I think most people would interpret the tag, which says the tag users are "actually" autistic, as claiming authenticity and distancing themselves from the self-diagnosed in our community.
This is why this discussion arises so often. It's confusing. I've seen this come up constantly on twitter in years past. And it comes up here on Mastodon, too.
Of course, the history is that the often abusive and misinformed parents of autistic children were aggressively and hostilely invading into online discussions (especially on Twitter) among and between autistics, disagreeing and talking over us, talking down to us, arguing over their insistence of "severity" levels of autism, telling us we weren't autistic, that we're not qualified to discuss autism, that we don't represent autism, that we're frauds, assuming all of us are just pretending to be autistic, that we don't know what it's really like to be autistic, and in various ways and forms invalidating us.
These often were full-on attacks upon our community on Twitter. Some of these "autism parents" or "autism moms" made this a daily affair, acting as if "parent activists" who are out to set the world straight with their presumably "correct" perspective on all things involving autism.
Often their views were shockingly ablest, invalidating, erasing our voices, forcing outdated and ignorant misconceptions upon us.
So the #actuallyautistic tag was created to declare autistic-initiated discussions to be just for autistics (including self-diagnosed). Allistics could ask questions by using the #AskingAutistics tag, or if they entered an #actuallyautistic discussion they were expected to be respectful of autistic viewpoints.
It's actually a good idea to describe this history often, not just for autistics, but for all the well-meaning non-autistics who want to communicate with us.
Because... to repeat, the tag comes off as gatekeeping. It sounds as if intended to gate-keep. Any reasonable person might take it that way. And it is gatekeeping in the sense of giving non-autistics a warning to respect autistic spaces and discussions. But it isn't to keep out self-identified autistics.
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.
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. #ActuallyAutistic 1/2
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 #autism, 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.) #actuallyautistic 2/2
I've seen a few accounts on Mastodon that have the hashtag #ActuallyAutistic and I'm a bit confused. Does it convey a different message compared to having an #Autistic hashtag?
@actuallyautistic @nhan I think it depends on the context. Here is my understanding of this hashtag and I welcome others to chime in or chase the hashtag back to the controversy. I have been told that #actuallyautistic was originally pushed by the organization #autism speaks to reframe the online conversion on what “real autism looks like.” The response was not as intended and the autistic community interested in reclaiming it did so.
Many of us are caught up in this historical moment, akin to Semmelweis (handwashing) and Snow (feces in well water): WE get that Covid is airborne; nobody else listens.
Compare the bezzle spanning between, say, the moment a woman in a strategy meeting makes a sharp observation and is ignored ... and a man offers the same perspective minutes later and is roundly congratulated for his keen insight.
Re: Covid strategy, is autistic perspective the embezzled party here?
Framing the marginalization of autistics as an embezzlement won't make anyone famous. I'll keep talking about it, and have some tiny impact, or none.
That there's a great destiny stretching out before autistics however, should we manage, as a population, to recognize and put an end to our being culturally robbed, whether by embezzlement, pickpocketing, extortion, shakedown, fraud, etc. etc. ...
The world that would follow that, I think, is worth working toward.
Me: Behaviors X and Y indicate an autistic neurotype is in play.
You, dismissively: But lots of people act that way!
Me:
You:
Me: nods slowly
You: drops jaw
Me: Yep. Lots of people have a neurotype in common with diagnosed autistics. And it's time to take their behavior as loosely indicative of this neurotype's true prevalence, while we wait for JAMA Pedriatics and the like to catch up.
JAMA, by the way, now says diagnosed autistics are 1 in 30.
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!
Trying to talk to someone about something that is obviously bothering you when you’re #masking poorly is the worst. Expressing myself when I am stressing about unrelated things adds layers of complications. If I could only just articulate So #frustrated with myself. :meow_sadreach:
@100mountains I can understand that it might seem like we #ActuallyAutistic peeps are in some elitist group, but as others have explained, it just differentiates us from relatives, or friends, of #Autistic peeps. I hope it also means that those new to their #Autism will feel more confident approaching us with questions. @markusl@actuallyautistic@RolloTreadway
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.
During the pandemic, I moved to this chill spot far from the city hustle. Now they're talking about going back to in-person work. Honestly? I'd choose my mental and physical health over that any day. If they don't let me keep working remotely (I'm gonna try with some doctor notes), then I'm out. My well-being is way more important than any job. I don't think I have too many problems finding new challenges. #autism#adhd#ActuallyAutistic@actuallyautistic
Another book on #autism, "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. #DrLukeBeardon#AutismAndAspergerSyndromInAdults@bookstodon@actuallyautistic
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? #it#autism#adhd#ActuallyAutistic@actuallyautistic
I am working on a short talk (~15m) for work about #AutismAwareness.
Any advice, things I definitely should/shouldn’t cover? Web resources with examples of such talks done well?
On the docket so far: identity- vs person-first language, under diagnosis, masking, executive dysfunction, sensory processing, special interests, truth/veracity, alexythemia.
Boosts appreciated to get more reach/advice. Thanks!