Sunday, May 15, 2016

Just how much - educate yourselves.


#‎EDS , it's amazing how much "viciousness" this thing can be. This unfortunately affected, but really strong young woman from Ireland (in the link above) has it super rough - as some do. This is a global urgency, actually. It really is, health systems around the world, even places like scandinavia (which is supposed to be a much better run socialized healthcare) are abusing and neglecting zebras due to, truthfully, fearing us in the light of impending financial burden. This needs to be fix this too, economists must get involved - and as for countries without any healhthcare, socialized or anything - my heart breaks for EDSers over there. Brutal ..

Clinical EDS is harsh on all who deal with it, and some really get the brutal brunt, and at this level it can indeed be life threatening without medical intervention and aides to eat, walk, move, sometimes even breathe. On an "EDS" spectrum people like this girl are on the very severe end of the "HEDS and classical" type group.Thought she's not vascular type 4 per se, she's profoundly systemically ill. People like this are the ones who the medicals fail most - until it's too late, and then further fail, even once the alarm bells start sounding ie. the gastric systems can paralyze, chiari crushes brainstem, bladder and/or bowels atrophy, co-morbid metabolic and immune disorders hit, etc..

We are in desperate need of research, fundraising for stability- achieving and rehabilitation programs, financial re-allocation, societal awareness, etc...

It's no joke. I'm a couple notches before this girl, though I'm super tough, and like to present well. Apparently I'm an ENTP personality type. People don't see more than the half of it, but those closest to me certainly do. I've been fighting this for years in silence and alone, in justify-ably obsessive-compulsive, hyper vigilant adherence - and I was branded crazy for it, for awhile. (Like many EDSers are.) It was so maddeningly hurtful ...

Before I began beta blockers, which I cannot seem to live without, things like my compressed brain and straight, inflamed, severely tense neck caused a "surging." Maybe it was too much hormonal activity, but I don't know. It made it very hard to deal with trauma, albeit real trauma, causing somewhat of a bipolar affect on me. I was reactive, anxious, moody, and sometimes paranoid. I held in a lot of it for the sake of my kids, or at least in front of my kids but - we all know how toxic internalization and repression is too. So, I really did have mental health issues but, "they" were so brutal to me. There was no viewing me from an angle of compassion, and this, in addition to the mental health affects themselves, was agonizing..

Instead of compassion and querying as to why (this would involve listening to me - double whammy problem here is the whole "not listening to autistic people" issue) they judged me as being crazy - pathological and awful in character, instead of harshly affected (tormented, really) by real physical, situational and psychological stressors. 

This includes immense chronic pain, and non-stop, often physically and/or neurologically exerting responsibilities - well beyond my body's ability to handle it (I know get more help, to at least soften this, but I'm still all too often pushing my limits.) Today I still have PTSD psychologically, and I still get situationally depressed - it's almost inevitable, but thank god for beta blockers - at least for now until a better solution comes. I never thought I'd "super advocate" for a drug but, yeah. 

They're supposed to protect my heart, and they do so in more ways than one. ; P

But when I was so cruelly pathologized, and then gaslit, in the throes of this, I stopped some of what I needed to be doing. I was being convinced that maybe I was nuts, and maybe I was a bad person. So then, I took the attitude of lets see what happens if I go lax on all my "rituals." I was beaten down so low that I had this sense of maybe not deserving to self preserve/self care in the ways I really should...

Then, the massive autonomic crash happened - then my fight to maintain at least some degree of homeostasis tripled. Today I use a massive chunk of my time slaving away at my own self management program; decocting herbs, carefully taking particular supplements at certain times of the day in intervals, taking digestive enzymes, specially preparing particular and usually medicinal-value foods (often in liquid form)...

I do believe that if I didn't do what I was doing, it'd be an even worse disaster. I know it, because I've tried it a couple times, and I won't be trying it again. I could end up on feeding tubes, machines, wheelchairs and I could even lose my life.

The thing I need most right now is proper bracing and to tackle specialized physio, while accessing some other medical services like cardiology. I'm seeing a neurologist in the near-ish future, too. I hope there may be some medications that may hit on deeper levels of what's going on, and thus be more effective.

I need to see a gastro soon too, because I'm fighting to get food into me, in spite of needing a lot of calories because my metabolic system is hyperactive and thyroid borders on too fast, even in spite of beta blockers. It pretty much "eats me up" - especially if I can't eat enough. I feel so weak, unless I throw coconut oil and egg yolks, and whatever else I can eat that goes in a blender, almost. My body burns up a lot of energy holding itself together and moving about. But, I'm still fighting for the gastro referral. It's one among only a couple that I have left to fight for, and I hope I'll get somewhere with it soon. I won't get into any more of what's needed and pending. It's so dizzying...

This is all in addition to one of the worst parts of EDS - pain. Our pain is apparently compared to bone cancer. I can agree. 


I'm just here at the moment to affirm this: Most people don't know how much of a fight the zebra fight is. If they only knew, they would never criticize or minimize us in the way they do, in ways they would never dream of doing to people with Lupus, Multiple Sclerosis, Muscular Dystrophy and Cancer. Well, for many zebras EDS is not that much different, in calibre at least, to the former mentioned. It's true and it's about time people #‎educate themselves

-Rosie G. 

Wednesday, May 11, 2016

Exec functioning double whammy overlaps ...

*Disclaimer A*

Out of all the things I didn't manage to lose ...even sunglasses... the only thing I lost was my "fight like a zebra" and "ask me about EDS" pins. Sort of a priceless loss...Uggh. I went to take them off one shirt, and put them on another, and as usual since my brains' always fighting to move and hold its body together, I blank out and don't execute the "next step."

I'm now clear on why I have a lot of challenges that seem like a person with a "bright person but with a brain injury" (this is one notch above "absent minded professor actually - it's absent minded professor who *needs* assistant or will not be able to hack it here) ie. motor planning/organization and short term memory #‎itsnotaseasyasitlooks #‎peoplehavenoideaabouttherealstruggle ...
and I'm not actually referring to the autistic wiring of my thinking patterns. There's an overlap here, 

So lines get blurred, but these parts are illness related neurological issues, albeit how an autistically wired brain might cope with that - I'm sure of it. I've just been reluctant to talk about it not wanting people to think I'm trying to say "autism is a disease" and all this. Well whatever. Not talking about autism per se, actually. Talking about my illness' neuro affects. I will not be screamed "curebie" at for that, by radical, internalized-ableist-attitude autistic community people who have no idea what it's like to live with EDS. Sorry, nope! Anyways ...

Forgetting, blanking out on steps, it happened many times during the trip but of course - I sometimes catch myself on it, and if I don't - well thats y I bring a friend. Ask Mary Freebed how bad it was, frazzled-ness. Walking the line re: a crash too. Eff this brain ; / ! This is not on. It's just me really maxed out re: fighting to cope and push forward.


But that morning we were rushing to pack up so - super annoyed about losing my pins! I don't know where the pins came from actually, because they were given to me at the EDS get together last week. I don't have the means to order them right now. But I sure will, once I can .. ; /

-Rosie G. 

#Undiagnosed day

*Disclaimer A*

Please take a moment to observe #‎UndiagnosedDay. There are many out there still suffering. I have a diagnosis (actually, three) but I nearly killed myself fighting for it. I feel badly for all those out there still suffering without theirs, it's an awful experience.

To feel sick and be so debilitated, it's getting worse, and you're not being acknowledged, in fact being criticized further - as your abilities dwindle, and this can affect your mental health - you cannot reach the bar anymore but you get disdain instead of understanding. You get depressed, frustrated, angry, some go downright cuckoo and have mental breakdowns - and then further criticized, further treated like some kind of shame, some kind of criminal. Even by your own family sometimes!

We should not have to fight like this to be acknowledged, to then often get psych-affected and be further scapegoated via the medical systems' big fat, and powerful "victim-blame-train"...and you know what; It's nothing to do with us being crazy or liars. It's about them and their shortcomings, and their cowardly "solution" to evade responsibility. That's what it's really about.

I suppose a few bad apples have ruined it for the rest of us, because "they" can conveniently point to those people and say "look, people do this" However, people who are genuinely "somatic" and/or "factitous" are actually very uncommon. The vast majority of us are 100% genuine, in real peril, and left without access to what we need for way, *way* too long, all the while being scapegoated with "crazy" labels thanks to medicals taking the natural psychological affects we might experience from gradually falling ill and not being acknowledged - and perverting that to use to their own advantage.


It's gross. It's medical abuse. It loses us valuable time - All because of this dark indoctrination currently infiltrated in the medical systems. That indoctrination exists for one purpose only: to evade responsibility. But this will change. Keep speaking out.


-Rosie G. 

Life is too short (so dress like a dolly er whatever else, if u want to)

*Disclaimer A*


This woman is a SuperHero, https://www.youtube.com/watch?v=tfgZNCq2h-o and she looks like one too. I love what this woman's doing; She is beautiful, and looks even more beautiful as a doll. I relate with the weakening, and the "uncanny valley" look that genetic illnesses like this cause, I get that - it does make a very pretty doll tho.. Hah .. for me, my muscles aren't degrading but my collagen. It's not the same but there's some similarity. So it takes me three times the energy to "hold myself together" and if not (while moving especially) I'll rip or tear or sublux something, and something which is already inflamed. I need help from people around me to do simple things now too, especially if tired. I won't attempt it cause I know I don't have the strength to hold myself together (literally) and will injure. But genetic illness doesn't keep us down; live life to the VERY fullest. I'm joining you sister. This is why I'm turning focus to music/fashion/creative art, and trying to contain the fork heavy, "ra ra" drama and whatnot. Life is too short. For her, and for me, that's literal.


-Rosie G. 

Moving past toxic people with call-the-kettle-black campaigns

*Disclaimer A*

"When toxic people cannot control you or what you do (especially if they don't like it) they'll try to control how others see you"

Oh it's so true, and it is very unpleasantly shitty.

This is exactly how, three weeks ago, I was lying in bed on a saturday morning, flaring viciously, while being messaged by these two girls I don't even know who are like "how dare you treat your ____(unnamed family member, not my husband) so horribly and constantly ask him for help, you factitious b****!"

So then, I congratulated them both for being so dull-witted-ly stupid as to so quickly buy such insanely empathy-demented, disordered behaviour, without having any idea of the actual facts and situation. They have no idea what I've been through growing up in toxicity, spending my whole life trying to overcome it, and then getting more of it when I came out publicly. I certainly having no desire to put up with any more of it, due to the limited life I have left here. Then furthermore, I reminded them that I put a libel warning out there, regarding anyone who tries to publicly declare this garbage about me again.

You know, it's like saying that about anyone who really does have something like, cancer or some other serious, possibly terminal condition and really is battling for their life. My degree of and manifestation of EDS and it's complications are in the calibre of "possibly terminal", and those are facts.

Even if you don't like the person whose sick and fighting for their life - it's still extremely low to be harming their image out there so that they can't get help and/or fundraise til it's too late. Have some respect, when a person is fighting for their life, reaching out for help, trying to knock things off their bucket list, whether that be to wear sparkles and play the freaking ukelele or whatever and sing "I feel pretty" from west wise story every day til they lose their battle, or whatever ..

Whatever it may be, have some respect for the profoundly challenged, in pain, and life limited people. You don't have to "love" that person. You don't even have to like them, but shutting up and having respect is the least one can do, in this situation. It's amazing that some people are so toxic and/or disordered that they can even lose touch with this seemingly basic concept.

Anyways, I have zero tolerance for being berated by toxic, resentfully hateful people - especially when they go for the whole "she's a psycho feigning her illness for attention" thing... and this is why I put a slander warning out. My truth is factual and documented. I wear my truth, just ask me to pull my skin.

I have such strong evidence that I'm sick at this point, that I could expose even the most cunning of narcissists, which is why that psychopathic psychiatrist who tried to pick on me (as well as pick on several other vulnerable peeps too) has her day coming to her. She's hurt a lot of others but frankly what she did to me shoots herself in the foot and exposes her frank abuse. If she loses her position of power, which she should not have in the first place, all it'll do is a favour to anyone who could otherwise find themselves in harms' way with her. This would only be a blessing, because the woman needs to be put to a stop, anyway.

I could actually get someone charged with defamation if they opt to keep up this kind of insane and abusive crap. I have made that clear to those who try, and I will continue to. You don't have to like me, but facts are facts. I am battling a serious illness. It's 150% real, even in light of whatever else you might think about me. So; have some respect, zip your hateful trap, and go away.

That one girl got scared and blocked me (I told her I screen shotted all of what she said - and I did) and, the other one apologized. Don't mess with facts, they shut you down - and now off with you.

-Rosie G. 

Semi-inadvertent gaslighting affects , but moving forward

*Disclaimer A*

*Disclaimer A*

April 2016

I think I have (so far) only half grasped how affected I am, because of the gaslighting that happened when the system went to great lengths to deny me. I inarguably have this horrible, potentially terminal condition. It's bona fide and clinical. 

I saw two experts, plus a dermatologist agreed (yet they tried to ignore it - a dermatologist he knows EDS skin!) and the experts know best..remembering how professional and expert Dr H. , my original diagnosing Dr. is, and how what he says should always count as the best answer. He examined me physically. He checked off many traits. He looked at my hands, my skin, my joints, my eyes, my mouth, listened to my history with injuries, fatigue, stomach issues, dental issues, etc then nodded "yep" and drew me a picture of the hypermobile spectrum, drawing a line past "benign bendy-ness" and into clinical, systemic collagen defective-ness internally ie. EDS. He said "you're there, it's clear. You are clinically EDS.” 

He noted I've become stiff because my joints are pretty loose (rather than "bendy" i'd actually describe it as "loose screws" ie. if i pull on them outwards they can pop out) and after years of pressure on them they're become osteo-arthritis and I also have tendonitis. Those things stiffen me so i'm not bendy like I was as a child. I started stiffening and really hurting at age 18, that the year I started drinking as a crutch painkiller. I'd get through what I needed to and if I was overwhelmed, I'd make a run to the liquor store and that's what I'd do. I was in pain, lots of pain. (and mentally overloaded as an autie too.) But the pain really "pushed me over." No excuses, just reasons. 

My skin is very soft and elastic, but it snaps right back. If I hang upside down my innards are so elastic I like, gag on them. Seriously. They all flop up into my esophagus. Ew.
Dr Y was very good too, he confirmed and got to look at my childhood photos, noting the skin and floppy-ness in my stance due to weak collagen. The dark circles, since I was 4 I've had dark circles. but I gotta say Dr H in London knows his stuff. He and his colleague tell me I don't have a chiari but I do have an EDSer neck which hyperextends, and the chiarian skull shape close to cerebellum but with no herniation, I'll take their word, as well as the word of the very nice Neurosurgeon over in Chicago who does these reads in exchange for a research donation, over the other american NS mouthwatering at the notion of cutting into my head for 200,000 when it may not (or at least not yet) be necessary. 

So I have to have faith and just know my limits, but not be too scared and work with the universe to handle this one week at a time, while I still strive to accomplish all that's in my heart to do. This is way easier said than done. I have to let none of these archaically behind, chicken-sh*t truth evading bozos try to deny me. Well at least, I cannot take it in. If they, in the face of enough things which should make me obvious, need to hang on to their cognitive dissonance issue - than that be their issue. Has to.


Like one of my former sponsors said to me “Even justified resentment can kill you.” 

I'll keep trying ...


-Rosie G. 

A few thoughts on how society is influenced to mistreat zebras/complex chronic illness patients

Disclaimer A

*Disclaimer A*

April 2016

People all too often take what I express about my illness out of context, they may act afraid of it or disgusted by it in some way - thus they pathologize it. This is what makes Zebras (EDSers) and others with similar complex chronic illness not wanna talk. So we'll either suffer in silence or express and be criticized...

You know, people have no authority to criticize and dump on what they don't experience - You try having all of these food intolerances and allergies. You try have gastroparesis and having the stomach room and digestion speed of an 82 year old. So if you wanna live in my body for a day, and still wanna thumbs down me then, be my guest...  
Society today is sick in the way that they're quick to judge others people's struggles. It's insane. I don't think they would've done it back long ago, but who knows. I wasn't around then. Really what I'm saying in the video clip is; I'm sick of having gastroparesis and mast cell activation/multiple chemical sensitivity. It's just that if I use big medical terminology like that, people don't get it and tend to respond even more coldly. But you can't win I guess, can you ...

Those above conditions are majorly part in parcel with EDS...a condition I most certainly have and have been diagnosed with three times actually (dermatologist, rheumatologist, geneticist.) I have paper proof which was already put on my healthcare fund, though I shouldn't even have to plea my case to a bunch of (sick minded if you ask me) harsh skeptics. 

EDS causes many very painful, frustrating, debilitating, energy sucking systemic complications, albeit strange, away from the norm, and mostly invisible (or not visible in the way you expect) ones - and yet EDSers  and those with similar complex conditions are horribly abused and judged, sometimes even by their own family members/friends. This can sometimes cause mental health affects that makes it all worse. As a result, family distances, friends turn their backs entirely, people who don't even know you may make hurtful allegations, etc..
Society is in denial about our conditions, because it's a problem on the rise threatening the balance books of the healthcare systems. They're also afraid of the lack of solutions, which could bring about liabilities. This is what it's really about ...

Don't people realize that the stinking and in fact abusive attitudes towards EDS and other complex, chronic, genetically based "newer" illness on the rise (mitochondrial disease, ME/CFS, EDS etc) is totally bleeding out into society too? Yesiree they are. But people need to wake up and see how badly they're treating those who are in a lot of pain and very challenged - and need nothing but support, not discrimination and abuse. Get with it people. Stand behind us to help us back the healthcare systems into corners where they'll have to make crucial changes, don't turn your backs on us and let us drown while you inadvertently bow down to change-evaders.

Their power is so strong that often (not always!) people's own family even, has treated their chronically ill loved one badly. Why? because "out there", family members and friends are constantly bombarded with subliminal messages about how much of a mentally ill, delusional "faker" their loved one apparently is. This needs to stop.



-Rosie G. 

Related to this: 

ABC123 healthcare ...

Doctors often say no when people ask directly for tests, putting people, especially those more rejection sensitive, in a position where they feel they have to coerse them indirectly, which is essentially manipulation. Then, when the patients tries to get their needs met this way (again, a way they feel cornered into) they often consider that patient “manipulative.” For any person this is tough. For neurodivergent people it’s extra tough; typical sociability does not come so naturally, so they have to think about these kinds of social scenarios thus more technically executing them.
This will make the process of trying to coerce the doctor more obvious. Either way, and with the latter person being worse off, doctors in socialized healthcare systems all too often accuse people, who are only trying to get their need met regarding their health concerns, of being a manipulative personality of some sort. Either that or they deem that the person has a somatic problem i.e.. they’re simply imagining their symptoms and experiencing them via delusions.You’re either manipulative and thus narcissistic-like, or delusional, for having a health problem that doesn’t have a simple answer, that is too expensive to solve, that doesn’t have an existing treatment (i.e. “product”) to be offered...
This entire sick ideology has been indoctrinated into medical health “professionals” by those running the systems partnered with those selling the “treatments.” I put “professional” in quotes because I don’t personally think it’s “professional” to make a pathology out of a persons’ primitive behaviour in the midst of attempting to meet primal needs. After all, people will do “crazy” things when their security feels to be at sake, including “coerse” ie. be “manipulative.” They docs should know ‘cause ummm - don’t they do the same thing all the time? How hypocritical. There’s the heppocratic oath - and then, there’s the Hypocritic oath, I guess …
But it’s all about balancing gain vs. loss. If a patients’ needs will cause a loss, because the testing cost is more than the treatments available (in order words: “So does this persons’ type of illness render a potential customer based out of current selection from our “Rx catalogue”?) then they have to find a way to write that person off. Then psychiatry comes in. This is why, in terms of clout, psychiatrists are so high up there in the “packing order” ... in fact up on the same level as medical docs. This is in spite of the fact that they’re not medical docs, and psychiatry isn’t really a science. However, psychiatry has been made a Kingpin in the Medical Mafia, because it is used as a weapon to devalue and silence a person. 
This is thought of as a convenient way to avoid liability (ie. the doctor being sued for neglecting patient’s reports of symptoms) you know, to say “well that persons’ crazy” and use that notion, which even gets written on paper (a type of defamation if you ask me.) As “legit” as they try to make this, it’s not, and it’s merely a "gate-lock” to the gateways which lead a person to a diagnosis, at which point they then expect some kind of treatment to address the problem/s (at least in the socialized system.)
In the game of diagnosis-evasion, either the treatment of the diagnosis doesn’t exist, is only accessible to the rich, or is too time consuming for them to administer - thus money consuming. Medical professionals working in socialized healthcare are groomed and coached to evade complex and costly-to-treat diagnoses which put corporates’ pocket books into the negative. 
ABC 123 Healthcare :D …
… but don’t they realize how bad this could all backfire? I think that today, there’s enough sick and debilitated people out there, who want better quality of life but have been silences as well as insulted, to come together and stand up against these absurd antics, which are in fact medical patient abuse. When medical patient abuse becomes a majority - what are they gonna do then? 
Ok so what are some better solutions. That’s an entire other piece. Maybe that's an economists job, or a team of medical-system-makeover-ists that would include economists as top lead. Not me. I'm just an autist-artist spouting a spin. Take what you like and leave the rest. But very basically; More research is needed. Better laws are needed. Less greedy attitudes are needed. etc etc...
I do think there are ways for profit to be still made in this process, though maybe not as much. Problem is greed levels are high and so is the thirst for optimal maximization or and ultimate protection of profit, beyond levels need to be up a couple notches from breaking even. Healthcare being a business is the way it is to an extent - but the way it is now is grossly unequal because the right quality of care is not accessible to a wide range of income levels, and a socialist “healthcare system for all” falls short when corporations have it by the balls.
It's almost better off to have privatized healthcare, somehow made at least more realistically accessible to all, then a system which claims to cover many who they ultimately get killed via neglect, under the guise of delivering “treatments" which are cheaper and therefore sub adequate. 
I want to conclude by saying it’s important to remember that there are many wonderful healthcare personnel out there, who are also suffering at the hands of the system. It must be really difficult for them to be wishing they could do more, and yet their hands are tied. It must be really hard for them to have to make such tragic decisions due to a gun being held to their heads. The ones working in this field who care must have hard times inside.
There are definitely narcissists and/or bullies among medical professionals. They certainly do have it easier…and they are indeed often hand picked for their “quality” of truly not caring about what they carry out.. but let’s remember that they’re not all sociopaths and/or narcissists, just like we who are complex ill are not all delusional and/or personality disordered. The systems and the awful faults throughout them are to blame for this. Greed is to blame for this. Dishonesty is to blame for this. People not thinking for themselves are to blame for this. Fear mongering is to blame for this…and it’ll continue “Unless.”  (“Like the lorax said”)

-Rosie G. 

See Like This is a heart from the heart, and nothing else



April 2016

When I introduced the "See Like This" symbol out to share in 2014, I did it with genuine intentions, to help and positively contribute to the autistic community. Though some liked it, others slapped me across the face with accusations of being narcissistic, creepy, too guru-ish or whatever. 

It was never meant that way. I'm an artist. An autist/artist. It bore an abstract meaning of what is indicated in the sidebar of the photo. I wanted to creatively offer my take on an alternative to the puzzle piece, and also broaden out to welcome not only autistic people, but other neurodivergents too (ie. ADD and others which may not have a term) So,
I'm not going to give up on this symbol in spite of the hurt it brought me, which partly contributed to my mini-stroke autonomic crash episode that badly wounded my neuro-autonomic nervous system and has me now being like a 60+ yr old person with a lot of therapies to do. I will no longer put up with abusive cynicism lashed out onto me by aspie "advocates" who project insecurities bestowed upon them, through somewhat understandable reason, though it's still not ok (and what they really need to do is look in the mirror and attain help somehow, rather than lashing out on the hands holding out - like some of us including me have.)
Let's be sensitive, even if their stuff seems awkward and thus inadvertently inflated or cocky; they're only attempting to like and enjoy themselves and/or their idea - umm, don't spit on that! I've only tried to contribute to the activism efforts in my own unique ways, so either people can respect and enjoy that, or take their sickness elsewhere.
I will not be ashamed of this symbol, because I still like it and stand behind it's meaning. I will share about what it means and was always meant to mean, and invite people to do the "hand symbol" selfie (see the See Like This FB page for Cassie's and Donna's examples) if they want to - as I had done before. 


-Rosie G. 

It's really hard for autist people to get the right help

*Disclaimer A*


Sadly many autistic/neurodivergent people (and traumatized people in general, too) who come around to try and seek help, who are already angry, depressed, defensive, jaded, and so forth, risk running into judgements in place of real constructive help. I discovered this the hard and painful way, it happened to me.
Although judging someone who has anger or other cognitive issues, and has made mistakes, may be easy to jump to, it's not the job of those enlisted to help people in such places. So it's too bad that it happens.
It isn't fair that finding the right help is so difficult for traumatized and affected people today. Considering what many of us have already been through as it is, and how much healing needs to be done in order to overcome those things, it's pretty harsh. But it's an unfortunate truth, that the process of attempting to recover is all-too-often repeatedly interrupted by further cruelty. 
This is what contributes to many autistic people becoming angry and/or depressed, and then having a hard time getting out of it, to the point where some may fall really far down the rabbit hole. It's a frustrating reality. However, this is why we're speaking out and taking a stand. There's always hope.
A formula for help, in a form that will not further harm, may be especially hard to find for a CPTSD affected autistic person... but it can be found. It may be a combination of the right introspective therapy types (even via reading self help books) and the right support group environments. It's a complex model of recovery, and it's different for everyone. At this point, I have mostly found mine, and am still working on it, though I have come a long way. It is still possible, and for those interested; don't give up!
I wish that "help" authorities out there would be less stubborn in allowing themselves to be educated. They often do not hold optimal value for our experiences -especially since the effort is grassroots ie. we do not hold "professional degrees." However, as more voices speak out and things get louder, I feel this will eventually will grow to necessary power and clout.
I hope that eventually, more people will see that all people's empirical, human experiences holds just as much value as what is taught from the "books" and those with specific degrees. I believe the devaluing of evident similarities in human experiences, which are reported in interactive discussions, is the missing piece leading to flaws in systems.
In the mean time, inaccurate and/or negative approaches to "help" autistic people with trauma and co-morbids continue to waste people's time and moneys, cause further distress in many ways ie. personal relationships, and yes, even contribute to conflict within the autistic community.
Today, potential and attempts of a traumatized autistic person (adult especially) to recover are repeatedly hindered by harshness. This then risks to tragically frame us as "badly behaving people" in spite of our repeated attempts to seek help in some way, and recover - This may then prove our critics "right" and worst of all, some may truly not be able to get better.
It's sad when this happens to one whoactually wants to get better. I feel like the only hope is really to rise above bullies and bullying (including internal, lateral violence) and come together as a community. In spite of our troubles and differences, I hope we can make change happen in the face of, and in spite of, such cruel barriers.
When we're able to help each other better than any "help" entity has ever "helped" us, this shows the potential for us to form our own systems of help and assistance, in the future. After all, it's we who understand the more precise nature of how we're affected, and thus know what may work best. Though in saying that, I feel like the community isn't there yet, because (I hate to say this) there is still too much hurting each other going on at this time.
Though I did experience bullies and attackers in various ways, and this has (sorry to say) included within the community, I'll also emphasize that there are many wonderful people in the community who feel like sisters and brothers to me, and who have been amazingly supportive and taught me/helped me out with important things, and in crucial situations. I'm really grateful to them. 
hope this community can begin exercising insight and develop solidarity while having respect for autonomy, over time and with practice. I hope the community can get through this current tendency toward discord, and come back stronger, in order to support each other with several pressing issues that affect all of us and are on the rise.

-Rosie G. 

To autist friends and peers

*Disclaimer A*

To fellow Autist/Neurodivergent/HSP peers (originally from site)

It's been amazing to relate with each other. Many of us have gone through a lot while fending for ourselves, and not knowing why it was so tough. We're survivors. Being heard and validated by others who've experienced similar, brings a sense of relief that's hard to find words for. Relating and forming community brings joy for many of us. Even though we're all so different and varied in our strengths, challenges and experiences, we have these foundational traits in common. 
Also, there are interested people who don't feel they are autistic per se, but feel they are neurologically divergent and/or highly sensitive people. Some of these people have received diagnoses such as "ADD" and other learning differences. I think it’s nice to welcome these people also.
Many of us agree and resonate with each other, in one way or another, through common experiences. We often share similar ideas, though again, we may have different takes things. Sometimes we'll blatantly disagree in certain areas, too.
When it comes to reading and viewing what I choose to have remaining here for public sharing: take what you like, and leave the rest. I think it's crucial to practice this in the case of anyone's sharing. Other than the common foundational concept of being an autistic person, which is a type of being in itself and not a disease, people may often have varying personal views on specifics.
These views will be influenced by a persons' own experiences, living conditions and personality type. It's good to try and challenge oneself to, even if you don't agree, imagine why that person, in their shoes, would see it that way. This isn't the same as agreeing with them. In discussion people often explain why they see it that way.
As long as the person is not being argumentative and attacking of the other, I think it's important to try and respect varying viewpoint with things other than core, foundational concepts (such as that being an autistic person itself is not a disease, and that autistic people need improvement of human rights.)
Unfortunately there has been some strong animosity within the community and so the above has lacked in being practiced. I have experienced this too, and it's really hurt. This weighs the community down and I hope that with time and practice we will get through to the other side of it. In addition to what's on the disclaimer page/s, I wrote a blog on this topic, called *Love and Tolerance*
Sadly, many in this community have been negatively affected by the lack of societal understanding, resources, help, as well as experiencing abuse in the school systems and at home, sometimes from a very young age. Some have become traumatized enough to be stuck in a place of darkness and/or anger, where they are prone to lash out on others. Some of these people may be unaware that they are on the spectrum.
It's common for CPTSD recovering autistic people to go through low-mood periods, and even make mistakes towards others, though with insight and reflection it can be prospectively worked though. Like I've said in some blogs before, I think some natural anger is ok, important, and actually shouldn't be repressed - if channeled and managed appropriately.
I think it's important that people in the autistic community consider the following; beware of this behaviour BUT also, try to give people appearing to behave like this some degree of understanding. 
Why? Because many autistic people who present with a lot of anger and such are struggling inside, with external stressors too, and likely had difficult, traumatic childhoods, all of which have caused them to develop CPTSD. In this, some may suffer from and display co-morbid mental health issues and/or pseudo-traits of personality disorders (such as borderline personality disorder, especially.) This is different from malignant narcissism, and can be recoverable. 
However, in saying that, if one is getting bullied and abused by such a person this is not ok. If this is pointed out to the bullying one, and there is complete lack of insight or taking responsibility, this is also not ok. In this situation, others absolutely have the right to set boundaries, or cease contact, in order to protect themselves.
If the bullying or anger spouting person does work on their issues, they may come back and seek to amend; but there's also a chance that it won't happen. While it's nice to remain with that hope for someone in the future, it's completely understandable and necessary for people to protect themselves in the moment.
Even though it might seem tempting, it doesn't really help to bully back. However, assertively standing up for oneself, particularly against abuse such as being lashed out on and trashing one's character publicly etc. is something we might have to do sometimes. It's just that dropping it after a time, and moving on, is the best way to not fuel the bullying further, and oneself heal from the experience.
Sometimes, people may take things too personally and angrily lack tolerance for another's opinion (even when it's expressed in a courteous way), they may project what they are feeling onto others, they may use hurtful language that tears the other down and devalues them. They may not have enough insight into it, but regardlessit isn't ok.
People cycle through feelings ie. anger, and sometimes do make mistakes if that gets too heated, but it's a question of do they own up to them and try to settle them, or not. Regulatory rules in groups are helpful, if not necessary, in order to prevent arguments that cross the line. It's a fine line because we don't want to repress or be repressed either. 
People who behave badly within the autistic community are usually (more commonly than malignant narcissism) hurting deep down, and likely suffering with trauma related psychological/psychiatric *comorbidity*, often born out of CPTSD. But, either healing or staying sick is their own journey, with those around them having every right to set boundaries when they must.
I've been in very dark places before myself, especially in my past, and most especially when I was poorly coping by drinking. (which was a long time ago now, mostly before diagnosis -  today I am 100% a non-drinker.) Sometimes, I may still struggle with somewhat dark moods, and feeling down or tempermental in response to stressors. I can't deny that. However, I'm conscious not to hurt people in this state (though I'm still working on the internalizing piece, which is one reason I need to "take some time out.") Over the years, I've worked towards better coping and have come far, but I'm continuing to work on it.
While I'm sorry for these people who are so angry and hostile, at this point, I have to have my own boundaries. I have my own deep inner recovery to pursue, so I have to guard that right now. I'm sure others like me could say similar.
Mostly recently I have been on that side of being very hurt by sick, dark-mooded people, often and including in the community (sometimes while trying to help them.) It really hurt. I've also been hurt by people, including in the community, who bully out of not respecting others' right to iterate their own viewpoints along their own journey of discovery, or who attack instead of offering gentle constructive criticism in response to material that may be inadvertently tainted. 
They may even go as far as to berate and devalue others' thoughts, experiences and what they have to offer. They try to dictate what is the "right way" to "be autistic." This is a very hurtful and personal thing to attack, because again, everyone's different and entitled to their own beliefs. It doesn't mean they don't celebrate being an autistic/neurodivergent person (and, even if an unknowing mistake is made here and there, people make mistakes too.)
For example, it's been often berated as "curebie" and "wu" if you're spiritual, into health, and maybe even not a huge fan of vaccines (for health reasons, not because of the "it causes autism" thing..see my video *here*.) I've had this happen to me and it's hurtful. It hit me especially personally because I am proudly and openly Pagan and very spiritual/esoteric, and I have a special interest in natural health (for somewhat obvious reasons.) None of that means I'm not proud of being a Neurodivergent person or think it's part of "disease that needs to be cured."  It also doesn't mean the I'm an "idiot/crazy person into pseudoscience." I'm a practical person who happens to be spiritual, much in the way of what Albert Einstein once said. My core beliefs are similar to his, and everyone is different.
Unless someone's material is clearly dark/violent, enough to do obvious harm to others, berating and not respecting is unacceptable. Even if material may be tainted with negativity and other cynical assumptions, the person may be depressed and not realize this, and would be benefit from having this gently pointed out to them (as opposed to being attacked.) If one doesn't like someone's style of activism/advocacy and other expressions of special interests/talents, then simply walk away (or give kindly constructive criticism if you think it could help them.)
I've had my fair share of bullying, by non autistics when coming out of the closet, by autistics within the community who decided they didn't like me for the above reasons, and in addition, I grew up with it in my family. I'm still a target too, which is why I have put my thoughts about this in writing, as well as set really firm boundaries on the disclaimer page/s. When it comes to non-autistic bullies who are just abusing for the sake of it, are not depressed in any way, and are simply being sadistic; I definitely have zero tolerance. However, these people are actually much easier to shut down, then the ones where there are more complex dynamics, and more of a personal background and history.
In terms of those dealing with co-morbid depressions and are on the spectrum/divergent, it’s up to these people to look within themselves, and find their own potential ability to self-regulate, own up, heal, change and make amends. In my case, I used a 12 step program, though I modified it to my being an autistic person. There are many ways to do it, everyone's different as to what works for them, but it one needs to do it and doesn't, others suffer.
I feel that too much of the above goes on in the community at this time, without boundaries and regulation, and I feel (sadly) that sometimes it's a little too toxic for me. I get why, and I've been there, but I can't afford that in my life anymore. This makes me sad, but it's a main reason for needing to keep distance.
I love many autistic people and always will. I am proud of being a neurodivergent/neuroqueer autistic person. I love what we stand for at the core. I am not ashamed and I'm sad that I feel like I need to keep some distance, but I feel like it's "just a break" and that eventually I'll be more involved again. 


-Rosie G.