I just got a very obviously sincere and thoughtful message from a stranger telling me, in essence, that the way I express my opinions and thoughts pisses them off. It wasn't a troll. It's clear I really bother them, and I get the impression that they speak for a lot of people here.
I'm sorry. I'm not likely to change. But I'm really not trying to provoke anyone.
@mattblaze This is the sort of thing #neurodivergent folks live with with everyday, online or IRL. The struggle is real. I applaud calling this sort of thing out and prioritizing your voice to others’ need to be passive aggressive. 😁 #ActuallyAutistic
I've been learning about all the different experiences that autistic people have.
For example a person who was diagnosed as a child, without their consent, will have had a very different experience from a teenager who is looking for answers but who's parents and doctors won't allow them to get screened for autism because they are "obviously not autistic".
And a person like me, who only realised I'm autistic when I was 50, who has a life of experience and self-knowledge to look back on when figuring out who I am, and autonomy to act on that knowledge, that a teenager just doesn't have.
I think we all wish we had support and understanding of our needs when we were children, but very few (if any?) of us received that, whether or not we were diagnosed.
I want us to stop building boxes. I want all #ActuallyAutistic people to know about the experiences of others that aren't like their own. I want hyperlexic autistic folks to speak with those who aren't verbal. I want those who go to university to speak with those who don't.
I want those who live independently to understand those who live in an institution. I want those of us who are utterly disabled by being autistic to speak to us who don't think that way. I want those who experience pure autistic joy to sit and understand those on the other end.
Because we DO all have a common thread. Something which unites us, which is why we all ARE autistic. I want us to TRY to not internalize what everyone tells us what we are and what we should be. THAT is why I do this work. Because I have seen "both ends of the spectrum".
Precisely because I have friends and family who are both "autistic superheroes" who advocate for themselves and others who cannot even begin to know what the concept of self-advocacy is. We are all different, but we are all in the same boat too.
The more we are divided the more our rights and lives will be violated by those who wish to change us or remove us from society and the world. This isn't hyperbole, but something we all know is happening on a daily basis.
That isn't to say that all allistic people want us dead or want to hurt us. Clearly not. But the system in which we live isn't supporting us and there are absolutely plenty of organizations and individuals who are ACTIVELY seeking to harm us. The majority are indifferent.
Sure, I can tie my shoes (poorly), remember to use the bathroom (usually), and work (sometimes). But I still have needs. I'm still legally & medically classified as "Level 2". Only I (and often my partner) can truly see that. To the outside, and even to most of you, I'm "good".
I have meltdowns often, cannot get out of bed for days at a time, have had major #AutisticBurnout periods in my life, get hurt on an almost daily basis, almost hit by cars on a weekly basis, cannot deal with even the most basic requests, need to be reminded to eat and bathe, etc
If I didn't have the supports that I & my partner have enabled for myself, I'd be on the street. Probably dead. I think of that often. The country in which I live provides little to no support for ANY #ActuallyAutistic people, even those with the highest needs for support.
What's worse, is that to the outsider, to the random onlooker here on social media, I am a "success". I am a coach. To some of you, I am a faker or even a con artist, taking advantage of autistic people. The reality is is that I am neither a success or a con artist.
I'm simply an autistic human in my late 30's who has been struggling and living in a NT world for a long time. I'm simply one of the "lucky" ones who was forced and abused into complying who can speak to others about my experiences in the hope to change them for others.
I'm simply an autistic person who "did what was asked" of autistic people by NT society and now needs to deal with the consequences of being simultaneously rejected by NT society as an autistic person and "not being autistic enough" as well as by parts of the autistic community for being "low supports needs" and even by many in the late dx community as "too negative" about the deficits of being autistic. No matter what I say or do, someone will be angry. Someone will place be in another box that isn't theirs.
Indeed, all of our struggles are NOT the same. But somewhere in-between all of these things, however, exists a common thread. A common experience of relating to the world and how it relates to us. A shared experience and angst living in the NT world.
I believe that the labels that are given to us by those who aren't #ActuallyAutistic put us into camps from a very young age or early stage of learning about our autistic selves. We internalize them. We believe them. We recognize their truth, while also seeing their flaws.
If I'm not making sense to you yet, stick with me. I am not a wordsmith and I have issues communicating and getting my thoughts out in a coherent way all the time. That won't stop me, however, from trying.
Whether the labels are about function, supports needs, masking level, ability to maintain social norms, or whatever, we recognize that we all have different ways of looking & being in the world and also can (but not necessarily) have trouble seeing the world thru another's eyes.
Supports needs, functioning levels, masking levels, all can change over time. They are not static. They should not be a way to measure who we speak to and who we relate to more or less. These things can, and often do, change in either direction.
Now I'll get personal. I was dx at 3 years old. I went thru the Special Education system and ABA for my formative years before being "mainstreamed". I was a "success" according to the educational, medical, and behavioral models of how we look at autistic people.
Their goal is to make us "less a problem" to allistic adults as we get older. It left me with scars & trauma that I'm still dealing with 30+ years later, but OK, "mission accomplished". Despite being a "Level 2 Autistic" I can live "independently" and therefore have "low" needs.
@mattblaze But you’re just supposed to acquiesce and do as we say. Then everything will be as it should. Haven’t you grokked the #ableist agenda yet…? There’s no rationalizing #allistic#righteousness and #privilege.
I was in a school district SPED meeting today. The looks on their faces when i remarked, “Staff requires training to understand the harm done by expecting children and parents to mask for their benefit,” truly warmed my heart. 🤣🤣🤣 #ActuallyAutistic
Is there value in a formal diagnosis? As far as I've been able to find, there's no treatment, there's nothing that will change the way my brain works. It seems like it's just getting a (fairly subjective) stamp of approval. And my GP is sort of an asshat, I won't even talk to him about sleep issues, I certainly wouldn't bring up something like this. Are there benefits I haven't found?
That self awareness & understanding of why life was so hard was vitally important. In many ways it's helped me access the limited support & some understanding.
Why I think you might consider only self DX & forgo officialdom's stamp.
Well because seriously harmful myths are held by just about everyone on what autism is. Most hurtfully & surprisingly are the "experts" & other medical staff.
A psychologist who was providing me with phone support for chronic pain & disability wrote in their final letter that autistic people don't have emotions! Despite my clearly expressing almost every emotion over the course of months.
You'll find that even if you're doing the same job you've always done post DX you'll often be viewed as incompetent or incapable. Perhaps you'll find someone who understands & accepts you & your unique flavour of autism but they'll be rare.
I would say knowing thyself is important & stick with it. Having a DX can give leeway in situations but it also conjures up ignorant prejudice in others.
I'm glad I found out in my late 30s & I'm loud & proud about being autistic but it's not for everyone. One thing I guarantee once you start to connect with others like you, you'll no longer feel alone & weird & instead have millions of people around the world who just get you. That alone is worth it.
Best of luck in your journey of self discovery. Trust in yourself. Nobody wants to find out they've got a delayed developmental condition but it's so much more than that. There are aspects of being autistic that make all the struggle worth it.
One being that there are so many incredible, kind & intelligent autistic folk out there. Follow the #ActuallyAutistic # to connect with some of the finest.
If you're a newly identified #ActuallyAutistic adult you are not alone. There are lots of people on the same journey as you, navigating the NT world and trying to make sense of it all. Join me and fellow autistic comrades for 5-weeks of exploration, growth, and affirmation.
Sooo... how do we get large companies to shift resources away from AI that will steal creatives' jobs, to building the technology from Black Mirror that will let me block people in real life? TIA
In stressful, dangerous or even trauma triggering situations I usually react with a fight or flight response. Only in extreme situations my reaction is a freeze.
What I like least and what is also a part of my camouflaging is the fawning response, because it is really bad for my self-confidence and my ability to set boundaries. Imo many forms of "therapy" for #ActuallyAutistic people (like ABA) teach them fawning and cause a lot of damage with it. @actuallyautistic
A very dear friend saved our asses from having to face the owner again today, although we still have to come up with over $200 by tomorrow because we’re so far behind. 😓
Right now we really need to get some groceries, so if any comrades can help with $18, we can put an order through. Ca in bio, tysm!!! 💗✨
My next #ActuallyAutistic group begins on Tuesday! This one is geared towards those autistic comrades in their 20’s - we will be talking about self-advocacy, unmasking, careers, relationships & more, meeting for 5 weeks on Tuesdays at 18:00 BST
If i got a nickel every time an ostensibly allied show with an autistic character ended up being full of stereotype suck and partnered with Autism Speaks , I'd have two nickels which isn't very much but it's still weird that it's happened twice @actuallyautistic#ActuallyAutistic#tv
Are you an #ActuallyAutistic adult in your 20's? Come join my new group just for you. We will be looking at relationships, careers, self-advocacy, and much more. Don't let money deter you, everyone who wants to join will be accomodated! DM or email me.
Season 04 Episode 11 of Fringe featured the meeting of the two Agent Astrid Farnsworth, one an autistic and the other neurotypical.
This episode aired on 2012-02-04 and entitled “Making Angels”.
The autistic Agent Astrid Farnsworth came from the “Amber World” (the parallel world), and the NT Astrid is from the “Prime World” (our world basically).
The character is, I would say “basic” as far as portrayal of an autistic person. Some would say it's a stereotype. But I like her nonetheless because it was not exaggerated, and the focus was not on her autism instead it was about her many skills.
And in this episode, we saw through her that autistic people are humans too. That we have our own struggles, we do cry and feel emotions (contrary to the claims that we lack it), and we just want to live like everyone else.
The autistic Astrid was introduced in season 2 (2009–2010). The actress, Jasika Nicole, was praised for her performance of both the neurotypical and the autistic Agent Astrid.
How about you, what do you think of her character? How was the performance (specifically with autistic Astrid)?
Join me and other #ActuallyAutistic comrades for my new SATURDAY group focused on those are newly identified and those seeking a formal or self dx. You have questions, have them answered in our community. Want more details? Reach out via DM or my site!
A thought inspired by several threads in the last few days: One thing I've recognized as autism in me, and that I have been unpacking for the last year is the giant map in my head of THE WAY THINGS ARE. I've been consciously constructing and redesigning this map since I was very young, and, in the last year, I have begun to dismantle it because much of it is based on my misinterpretations, or my gullibility. I've also realized most people don't use maps.
Season 04 Episode 11 of Fringe featured the meeting of the two Agent Astrid Farnsworth, one an autistic and the other neurotypical.
This episode aired on 2012-02-04 and entitled “Making Angels”.
The autistic Agent Astrid Farnsworth came from the “Amber World” (the parallel world), and the NT Astrid is from the “Prime World” (our world basically).
The character is, I would say “basic” as far as portrayal of an autistic person. Some would say it's a stereotype. But I like her nonetheless because it was not exaggerated, and the focus was not on her autism instead it was about her many skills.
And in this episode, we saw through her that autistic people are humans too. That we have our own struggles, we do cry and feel emotions (contrary to the claims that we lack it), and we just want to live like everyone else.
The autistic Astrid was introduced in season 2 (2009–2010). The actress, Jasika Nicole, was praised for her performance of both the neurotypical and the autistic Agent Astrid.
How about you, what do you think of her character? How was the performance (specifically with autistic Astrid)?
Hey #ActuallyAutistic folks:
Are noseplugs a thing? Like earplugs, but for when the smell in the room is just too much?
If so, where do you buy them? I would very much like some #recommendations.