Stand up for me

I'm not a little girl anymore
you cannot drag me on the floor
you cannot kick open the door
no, you can't hurt me anymore
and how dare you have the gall
to call me names yet still
when I'm already ill
whence I'm wounded by the lore
but what is it, at the core
which causes me to brood
which starves my brain of the food
it started long before
nearly at the beginning of my time on earth
my character was punched
and in a corner hunched
I sat there capped with a dunce
and told that I was bad
til it drove me raving mad
and I pseudo-fulfilled your prophecy
and I wandered oh so aimlessly
to prove
just who I really am
whence my right to be, was dismissed as sham
til I felt like a sham...
you shouted "how dare you ask
for a sandwich
how dare you be hungry
and have needs
to be fed, when you're bothering me so,
you don't have a right to have needs
not a right to be a child
not a right to ask please"
so I gave you my soul
til you threw me bread
or roses, if I was lucky
i'm was an exhausted marionette
even then
always saying "sorry"
for what I didn't do wrong
until what became my story
was a self-loathing spawn
whence I was told
I was so terrible
a bad egg
from a grand hen
til I felt just as rotten
and the rottenness spilt through me
as the milk that was spilt
was a heinous crime
til my heart was broken
so broken from the prime
when my sister left
when she ran away from home
to leave me in your hands
and the new brunt of your plans
to make a new cinderella hurt
to cover her in dried up dirt
after you built me up again
only to knock me down again
til my identity was very blurred
not knowing; am I good or bad?
my heart was tossed around in a frying pan
then from the frying pan, to the fire
whence it feels so incredibly dire
whence the background going unsaid
is of a million tears, that were now and then shed
but now, I've had enough
and my anger flows red
as I build my gate and attach a lock
as I vow now to truly
put up the block
that I so graciously ignored
when I tried to keep the peace
while continuing to hoard
whence the deepest pain was stored
and it was to be done away with
I can no longer live, with a myth
of unconditional love
when I know better
so I call on strength
from up above
to grant me the serenity
to set a long overdue boundary
that will finally set me free
and allow me to rebuild
for the hole in my heart to be filled
so I can stand up
for me

Rose Whitson-Guedes Au

I'm an autistic woman, out of closet; and I feel persecuted.

I am precocious, and I'm a woman. I'm feminine, and autistic. This apparently makes me evil.  This apparently makes me a woman with no feelings, to be feared, to be persecuted for the way I am. I am an artist, a writer, an activist, a friend. I'm considered a daredevil in todays' times; whence opening up to expose things not only I am dealing with as an autistic person, and as a person affected with complex health issues. I feel a sense of purpose in doing this; it is not for simple attention getting motives. I don't' know how much more clear I can make that, and yet still, what I'm doing tends to be seen in a perverted, or even just fearful light. I am a loving mother, and an autistic savant woman. I've opened up, "came out of the closet" and now; I often feel like a target in a Witch Hunt.
It was proven by my childhood footage that I am autistic. The more I learned about it, the more I knew what the truth was. So I sought out a thorough review, by an experienced neuro psychological professional. After careful examination, my truth was corroborated by scientific method. I was filled with a mix of joy, grief, and rage, to learn the truth I'd always known deep down in my soul.

I read at age 2. I lined up dolls, stuffies and cars too, but in eloquent configurations rather than plain lines. I played with them by design..and I did play too, in my own way. They were all part of a scripted scene, in a fantasy world I had derived from different books and movies I'd watch and read, but I mixed them all together and made it my own thing. This is still imagination, be it in a precedented, perseverating fashion.

I spoke in full sentences with cleverly mimicked tones, only to apply them in the correct context, in order to get my needs met. The neuropychologist watched these videos and noted this. I had mega sensory issues, and i still do. It made me quietly, girlishly curl up, and shut down... or shut out into my own world of fantasy. With unicorns, rainbows and friendly fairies that understood me. Yes, autistics can play pretend. Yes, autistics are creative.

I had meltdowns, when I was little they were subtle because my emotions were up in the sky, I could barely execute them until I was 7, then I started crying like a 2 year old. My mother would say "what happened to you, you were so perfect? now you're acting like a baby" one word: Pervasive Development.

I couldn't execute my emotions when I seemed stoic, and apparently "perfect. When nobody could tell whether I even liked my birthday gift, and behaved toward me as though they felt I was horrifically and unacceptably rude, as a result. How much of a Princess I must think I am; because I couldn't show my emotions so much, they were too overwhelming that they had to be blocked, hovering above my head. But I felt them. Very much so. I care very much about people, and would constantly express how I wanted to "give the people on the street gifts and food." So this is "no empathy??"

Sometimes I didn't know how to cry, because it hurt so much I had to block or freak out. My body would shut down on me, I would not be able to even go to the bathroom sometimes.
I was smart enough to stay hidden. I was smart enough to feel it wasn't safe to expose my troubles...or they'd get me. Somehow, I knew. At age two. At age two!!

I injured myself in the bathroom. In the bathroom and on the top field at school, when no one was looking, I bit my hands. I have scars to show for it. Some subtle, white flecks on my hands. When I really wanted to cry but felt blocked and couldn't, I'd stretch my eyelids open because all I wanted to do was cry! Even if it was induced by too much air irritating my eyeballs, i thought, perhaps...it could bring on a real cry and get this junk out of me!! It began to work. This is how the tantrums at age 7, started.

My intelligence masked my deficits. When I appear "scripted" and speak with my female voice and soft features, i'm seen as some sort of calculated little dark witch, rather than a human being. Because I'm hyper verbal; hyperlexic. Do they even know hyperlexia is a trait of high functioning autism, and autistic savant? Can they not understand an intelligent brain of different wiring trying to cope in a world inhospitable to them? Can they not commend, support, and have compassion; instead of judge and attack? One day maybe, one day...

I am persecuted because I can speak eloquently well, like some are with the math, words are the strength of many verbose autistics. There's a dictionary in our brain. All memorized, via savant working memory drawn upon by a special interest in the meaning of words. It doesn't mean we aren't' still socially different, and may miss certain nuances. Society doesn't understand this discrepancy at all.

I can mimic the scripts of how to use my voice tone....all the way to elaborate conversations. Yet my in person behaviour is childlike, girlish. I have gotten passed off as stupid, or frowned upon as if my behaviour and demeanour warrants I must not know what I'm talking about. Society cannot fathom this kind of discrepancy, either, clearly. More research needs to be done, and awareness propelled for people like me to get a fair chance.

I have an intellectual understanding of sociology, albeit not an inherent one....but it's strong despite. However, rather than a performance of effort, because I care to try... I can be seen as a criminal manipulator! Especially because of the way I can look and present, which as a woman, society pressured me to do, whence I took the cues and introspectively trained myself. I trained relentlessly throughout life, with many bumps, bruises and full blown falls along the way... until I was polished enough to not get hurt. Yet I still get hurt, now because apparently, I'm too polished yet internally struggling with being allowed to, and wanting to, just be ME.

Well, on top of being seen as a "witch" to be persecuted, I am actually pagan... so I guess this doesn't help. It's an earthy spirituality, and I respect all religions and nature. Ultimately, this isn't Salem. Ulimately, this isn't Medieval Europe. This is 2014. But they haven't changed it seems. They still jeer, heckle and bring forth the rope...but, they do it in a different way. In a way where they make you think you're doing it to yourself....

-Scarlit-Rose Ashcraft 

www.scarlitrose.org

Nowhere To Turn For Real Help

Ty Weightman was kept from the truth of having an Asperger Syndrome diagnosis at age 8. Even in the face of knowing today, it's an uphill battle to get any real help, as poor treatment and "mental illness" labels continue to upstage the truth; autistic reaction to poor treatments, inhospitable environment, and severe lack of understanding and compassion for any of it. Sadly, this is all too common, for most autistic people, to endure. Ty uses the word "persecuted." This is what many of us deal with, in a nutshell. Society and systems are dangerously un-evolved. Autistic persons are getting the brunt of the abuse, whence they develop mental health comorbids due to the above, and the real and right treatment is just not available or even made known. This causes debility and death on a daily basis, and it's just not necessary if people would open their eyes and their hearts! The closest we come to "help" at this time, is helping each other, to simply survive and keep at bay. It's not always possible whence chemical imbalance and neurological damage happens from the trauma. What can you do to help? Educate yourself. Get to know us. Understand who we really are. Have compassion, not judgement. What has happened to Ty and thousands of others can be prevented. It takes one person at a time, to share and learn. Share this story. Share this blog. If you or a family member have been victimized, please send me your testimonial story. 

Ty's Story:

In 2003, all hell broke loose in my life. I began to not sleep more and more, and started to act really irrational. I was always different, my entire life I was treated poorly for me being different. And I had "Freak-Outs" as my sister would discribe them throughout my life. My parents reactions to my "trantrums" as they discribed them would result in at times sever corporal punishment. Sometimes my sister would get into trouble trying to point out to my parents, that it is apparent that I do not act out on purpose, I just can't help myself.

 

I took off to Florida in 2004, the PTSD from my childhood, my parents harsh treatment in my differentness didn't help my condition. 19 days of insomia and mania, caused a roommate to call 911 on me, stating that she was in fear of her life and the life's of people around me. Which is kinda funny cause anyone who knows me knows I am not a violent person. But the police showed up and I was taken away inpatient to Winter Haven Mental Instutution.

 

In 2005, I came back to Washington State.

 

I've been since diagnosed with several Mental Illnesses (Bipolar Disorder, Generalized Anxiety Disorder, Borderline Personality Disorder, Social Anxiety Disorder, Over Compulsive Disorder)(Bulimia), ADHD, and about 5 years ago my sister told me that when I was younger, I was diagnosed as Asperger's. She said it in anger because I had a "Freak-out". She has since appologized to me, she told me that is was wrong for her to tell me like that, but it wasn't doing me any favors by keeping it a secret from me. My parents knew, they were told when I was 7 or 8 years old. I always felt there was a secret that they were in on, but I had no clue in the matter as to what it was. Things just has always been different for me. I didn't understand people, especially my peers. It seemed to me they enjoyed bulleying me. My sister always seemed to be on my side, she had never been really mean to me, she always tried to include me in her life.

 

I was persecuted a lot for not maintaining eye-contact with people, especially from my parents. I never quite understood, why this was such a big deal. I lost focus a lot, another one of my parents Pet-Peves with me.

 

I can't be online for very long, because I resently been put on suicide watch. A few days ago I placed myself in my car and closed the garage door. I just wanted the pain to go away. A fellow UU, sent me your link and told me to watch, read, and write you. I nearly didn't make it to my 39th birthday which is March 14th. I hope I will be able to go home soon. But right now I am not suppose to be on the PC. So I am writing this really late at night, my roommate has privilages, so I can sneak the PC late/early morning. I am really not well, but am fearful to talk to my counselor honestly because I want to go home. If I don't "play" by societies rules, they won't let me go home.

-Ty Weightman

I

Worse Than Hate

Thinking a bit about hate and discrimination and such... You know, hate is generally a misnomer. One hates things and people that have presented specific noxious experiences, such as bad Brussels sprouts, or the G.P. who convinced the psychiatrist to blacklist you, but it is impossible to hate someone with whom you have essentially had no personal interaction of any kind whatsoever. There is a negative emotion there that prompts a person to do things that are wrong to others, sometimes things that are outright evil, but it isn't hate, and in fact, to call it hate would be to ennoble and dignify it beyond what it deserves. That which is most often referred to as hatred is generally not actually hatred, but horrifically misdirected frustration, if not simple fear of what one knows very little about. It is interesting to note that where hatred seems most deeply rooted and sincere, the one that appears to hate has very little power indeed over his or her own life circumstances, in fact, hardly more than the group that they themselves oppress. Understandably frustrated by being deprived of resources, and means of obtaining the resources, they are unable to see the mechanism by which they and the group whom they oppress are both being deprived of what they have earned and what is theirs by human birthright, too. Unable to see who owns the arm that strikes them and shakes them down for what profit can be obtained from them, all they can do is feel the slap, over and over again. The sole consolation they are given is to have someone to blame, not the same tiny collection of individuals actually responsible for creating a situation capable of choking the life even out of those best equipped and determined to endure it, but someone who has been made small enough to tear to pieces, which they proceed to do. The pleasure gained this way is animalistic, and clearly serves as an outlet for much adrenalin and stress caused by the buildup of an otherwise useless flight-or-fight instinct. It even provides the instinctive reward of having gone hunting, painfully and graphically illustrated by the results of some examples of this, namely other human beings literally torn limb from limb, and savaged even long after the point where life was mercifully extinct, as if a meal could be made of the victim. In a confused haze, with the glow of satisfied instincts still lingering, what follows could be mistaken for relief and fulfillment, except that neither of these things has been provided in reality. By having deprived someone of the pleasures of living life, they have not extended their own, nor have they enriched themselves much beyond the conceivable proceeds of robbery. The circumstances that fuelled their frustration will remain unchanged, and will give rise to more of the same. Furthermore, this diabolically brutal and effective means of distracting a group that is poor by allowing it to be slightly privileged over another group that is also poor has the bonus of distracting two sets of the chronically swindled and cheated at the same time, since it is as hard to think clearly and abstractly about resisting wrongs when one is in terror and chronic fear for one's own life to a certain extent as it is when one is allowed to imagine that one already has freedom and power over one's life and the effective means of defending oneself from exploitation. It seems to be a deceptive strategy with an indefinite shelf life. What is clearly a certainty in any case is the likelihood that somewhere, someone is giggling maliciously over what 
goes on below.

-Tanja Guven

there's still good somehow...

Thank you so much to my friend Dylan Hoen. he left work to come and make sure i was ok when my dad was out. i was panicking and scared. He brought me food, probiotics, potassium and electrolytes. we figured out the reason why i was so shaky/seizure-ish feeling was potassium drop. consuming potassium worked to take it down, though didn't cure. I had eaten nothing up til then, for hours. been hard to keep food down so taking it easy. but when people do that kind of thing for me it reminds me that maybe life is still precious. when i hear my sons voices it's the only time i know that up until now. my heart may be broken because of all the cruelty towards autistic people, for all the severe reverse-discrimination and the denial of us when we cope, the invisible bullying, the framing, the blacklisting; the abuse... but for every one of those vicious reptilian people, for every one of those sensory dulled desensitized brainwashed dullards, there's a good person who knows the truth. there's a good person who has a sense of real morale in the name of love, rather than a pseudo morale that they've been told is "right" that whispers "life isn't fair, get over it." yes in the name of love, and compassion, in the name of God; for every nasty greedy material possessed reptile pillaging the beautiful earth of all it's natural resources, poisoning the food supply with unnatural substances that make us all ill in one way or another, and caring not about any of it; there's a human being whose good, and that i love.

Breaking My Silence Update

Entry 73: “Update Regarding Breaking My Silence”: my medical care is still tainted, I feel it’s because I’m autistic (feb 11)

My medical care is still seemingly tainted, and I have genuine health problems. They are barely getting addressed. They're not being thoroughly evaluated. Not only do I not feel entirely safe; I have no faith in the safety of system (in my case especially) anymore. They don't understand that I experience my symptoms differently, and lack trust. I've been burned by Drs going down the wrong avenue many times before.

I don’t know if what was written about me is affecting me, or if it’s still being used against me despite the now obvious facts: I am an autistic woman, with a diagnosis official enough to qualify for a government support program in which I am in. They know this, are they trying to dance around it? Something feels odd to me, but I’m not sure what. I am bewildered.

Often, when I get investigated for a certain “textbook condition” it turns out to be something different, and they frustratingly overlook things. I have some evidence of certain things, such as a mild complement C3 deficiency (an immune protein.) However, the information is limited, because investigation has been very limited. After what happened, one could imagine this only getting dangerously worse, the word to describe it could almost be blacklisted.

Sorry to sound dramatic, but it’s as if the more that I talk, the more they want me to shut up. It’s as if they don’t want to help me find the causes of my issues, they want to bury them. So they need to believe crap written, at least in some regard. I don’t get it. Maybe they don’t fully understand the answers, and they don’t want to admit it? Autistic body types are so different, in the way they manifest their health issues.

Yes, I have a history of some past diagnoses that give clues, to me, and from a naturopathic/integrative point of view, at least. However and again, they have not recently been further evaluated, despite symptoms changing, worsening, and potentially progressing though I meet them with all the "my own witch doctor" fight I can muster. I do this because I have to keep going, for so many reasons...and especially because I'm a mother.

I come from a more holistic, naturopathic view on things. I prefer to go that route as much as I can, unless the situation is more dire and acute. Even then, I'm so sensitive that I never know if the "treatment" will make it worse in some way; and it often does. I must have painfully unrealistic expectations of this system, at this time. It must just be, simply, un-evolved. Well, it needs to get on with it, for the sake of autistic people. It can’t just continue to turn a blind eye. I am paying for it, so may my family. I want a better future for my children. I hope the system changes by the time they’re all grown up.

I'm very hyper-sensitive and reactive to Rx medications, and in addition, I react backwards most times. They treat me as though I'm being impertinent or haplessly psychosomatic when I try to politely imply that I cannot be a guinea pig, and that I need actual testing, and when I try to connect the dots to see how things may potentially be relating with each other. The frustration, in the face of my having to fight progressing illness episodes of various kinds, is agonizing.

To them everything is separate...my belief is it's just not like that, particularly for me. Also, the nature of my challenges is, again, common among autistic people. All my friends in the community, especially other women, have similar issues to me. This may be most essentially due to the fact that autistic people are far more prone to autoimmune reactions, and research is now beginning to prove this.

In addition, autistics have unique metabolic differences, and difficulty with fighting off certain infections, which then become chronic and insidious…especially in the gut. Some autistic people have reported that they feel physically “child like” and that their acute reactions are like being a “sick child.” Furthermore, our skin and tissue type is often hyper mobile, soft, and more elastic. I guess this is why many autistics are now being looked at for Ehlers-Danlos. Is is EDS, or is it something similar, but unique to a proto-autistic genotype?

Most importantly, the current treatments used for conditions are often no appropriate for autistics. I’m not the only one whose had bizarre and negative reactions to medications. Furthermore, even if medications work for a time, they seem to either lose their effect and/or cause more damage after awhile. Research on all these matters is so badly needed.

Really, how can we all be so similar if there isn't in fact an "autistic body type" that the medical science is mostly overlooking and much of the time, blatantly ignoring into potential danger.

Autism and fibromyalgia syndrome are strongly connected, as are connective tissue and autoimmune disorders. Many people know those things are very difficult to diagnose, develop gradually, and hide. I'm also traumatized because the same thing happened to my mother, she was unwell for years without any acknowledgement; she ended up with leukaemia.

I am a mother, and a good, passionate person. I am a human being, and wife, mother, friend, abuse and hardship survivor, trying to function as a mother, and an ambitious somebody who wants to pursue art, writing, leadership/activism...and have a reasonable quality of life. Is that so much to ask? I want justice, I want closure, I want answers...but how do I get any answers when I am barred from medical investigation. Written off by a cruel frame that is simply not the truth.

My health challenges have really progressed in the past year especially, and I think it got here from all the stress of the former. Before, I was crying about a wolf that nobody could see, it was too far in the distance. Well now, it feels like it's approaching, but; nobody believes me. It feels frighteningly real that in this position, I may be in some degree of danger. All I can hope to do is keep as calm as possible, and move forward with my endeavors, as well as try and manage as best I can. I will go back to the herbal college; the students there are very kind, wholeheartedly support me, and will try to help me out as best they can. It’s my best option, as of now. Plants can help, they really can.

The system already gives people the short end of the stick, and many natural clinicians know this. It’s at least refreshing to have those folks feel the same way as I do, autistic or not.

People already fall through the cracks as it is, imagine getting it ten fold when this system possesses detrimentally erroneous information about you. That may be where I’m at, and at least I do have people who care and get it recognizing this. I’m not entirely alone

Going to the conventional doctor is a fight every time, because this thing is on my public file. I have workers attempt to support me as I'm having to defend myself, and plea my case. They only somewhat help, for many reasons, some of which are red tape related. However, I may have to enlist an actual advocate, because I cannot rely on those not allowed to be advocates; polite diplomacy doesn't work with what is working against me. In retrospect though, it is so energy draining, so I may only do this if it becomes urgently needed.

The only thing that may effective, in that case, work would be "Hi, we realize that this individual, who is officially on the autism spectrum by government standard criteria and thorough testing, has a misdiagnosis on her file that may cause bias. She is in the process of taking legal based steps to amend that." You know, something that really sends the message just how serious I am, because frankly, it is a serious matter. The word “legal” is bound to convey that.

I just had an awful experience at an endocrinologist, and felt like I pretty much lost the opportunity to have my endocrine issues looked and addressed without biased. The upsetting part was when she admitted she was influenced by what has been written. She iterated "well, we're not even sure if you are aspergers', seems you have a different problem, and it's in the system." I was floored, shocked, and instantly very upset.

My peer support worker then said " Actually, she is autistic, this is strongly confirmed by a government support program when they performed thorough neuropsychological testing" This changed the doctors' tone a little, though she still remained a little ambivalent. She then shrugged, and offered an appointment "with a dietician to discuss some management ideas, for what sounds like it might be a mild blood sugar imbalance." Once again, I then flew under the radar in terms of discussing anything further with her.

I shouldn't have to do this, defend myself like this; on top of making the efforts I do to function via natural therapies and specific dietary measures. It's just too much. I'm not a superhuman, and one can only take so much, yet I keep standing somehow.

When I enter the room, the physician may be already biased. Anything I say may be taken and seen in the light of this report, which pathologizes my autistically verbose way of communicating. It's actually very contradictory and ignorant. If one who understands autism spectrum were to read the report, they would agree. The thing described my aspie like behaviour, and then sitck it to something else. It’s very absurd. Frankly, anyone with a brain would read it to be both cruel, and unintelligently ludicrous. The thing even says I may "manipulate" one on one counsellors and advocates. That part infuriated myself, my friends and family the most, as it’s clearly an attempt to most violently silence me.

So, if these ignorant doctors think I'm just "manipulating" advocates and only half listen to them...assuming they're half-wittedly gulled… they only half listen to even the advocate.

In truth it is they, the doctors believing this unbelievable garbage who are half wittedly-gulled. Why do they do it? It’s simply because they take any doctors’ word as gospel; due to hierarchal ranking. That's it. Does it matter how inexperienced relating to autism, unethical, ignorant, insane or abusive a doctor may be? It doesn't seem so.

I am willing to undergo, and in fact happily invite, any investigation into the allegations made against me. All that will come of it is proof that it's not true at all, and is a load of garbage. I really want to recover this year, and I'm trying hard...but it's hard to recover from trauma when it keeps perpetuating. It's been excruciating. My heart and stomach are both hurt and frozen solid some days.

I feel like I'm living in a nightmare right now, to be honest. I know I have to somehow see the silver lining of somewhere. I'm so done with hurting over this kind of stuff, I know who I am. However, it's really not safe, when I'm not getting medical care. I've tried praying about it, and basically winding up letting it go; writing off any faith I'll get medical care now or in the nearer future at least.

Ultimately, what kind of care is available for my issues right now, anyways. Maybe conventional treatments aren't for me, and it's maybe it’s meant to be like this. I don't react well to most, though I think that if one can help me (like an immune modulator) it could be worth a try.

My instinct is going off; there are things in which may need to be addressed, and may, at some point (hard to say when) become at least somewhat serious if they don't. I don't know what specifically, though I have some vague ideas, which are actually based on my family history as well as past evidence.

My rheumatologist has noted I have autoimmune like symptoms that may go beyond "fibromgyalgia." I have a partial marker for lupus, so he has tested me twice.  I don’t think it’s lupus per se, I think it’s more complex and odd than just that. In addition, my body fights it. He may test me again anyway, if he hasn't been influenced. I don't think he has been, because though he's bold and brash, he does have a mind of his own. He knows about the report, and he sounded like he thought it was petty and ignorant.

He's no naturopath lover either, but I don't mind the guy at all. I’m greatful someone has a mind of their own, in spite of him admitting that his hands are a little tied.

Ultimately, these people who think otherwise are misunderstanding the way I communicate. They think I want to "tell them" what.  No, I’m not; I'm merely being inquisitive...but I'm not even allowed to be.

It's bad enough if any patient is like this, but with something like this sitting on ones' file, they perpetually frame themselves just by opening their mouth! They are given baseline testing as they have to be given, and when nothing shows up, they do not further investigate. They are seen as "a waste of time, and a "factitious and/or psychosomatic." It is so wrong, and it happens to the ones who question the inadequate system the most. I’m not the only one this happens to, I can bet it. I can also bet that the ones who challenge the system, the most, and are different, take the brunt of this structural violence.

Furthermore, it seems that my children are not getting taken as seriously either...because of what it says about me. It says "conditions can be a gateway to her to that way with the children too” In other words, "don't feed into (i.e.. genuinely address) her children's' health issues because this can cause her to develop (something awful.) What?? By the way, I am not the first autistic woman mother to be accused of such things either. There is actually an advocacy organization in the UK set up for this matter. I forget the name of it now, but I am definitely not alone here.

My son was pretty much passed off in genetics, even though his OT report shows muscle weakness, hyper mobility, and fine/gross motor difficulties that are quite profound for a child who isn't really that autistic. Elliot has some aspie-like traits, and ADD features for certain, but my younger son is not autistic.

I don't know what he is exactly, like me, he very much does not fit into any box at all. Unlike me though, he doesn't struggle as much socially, though he can be mildly idiosyncratic and quirky (but not enough for kids to be put off.) Sociability comes more naturally to him, I always had to "think about it and contrive it" before I would step in the water. He doesn't seem to have that, though he has other aspects of autism spectrum.

What concerns me about Elliot is more his physical health, because I see things about him that concern me, his soft tissues, his bendy-ness, his easy bruising, his body pains that seem a bit extreme, his susceptibility to burn out/losing stamina, and sensitive tummy. It is slight though, not major. So I guess it should be left alone for now. The system isn’t preventative anyway. I’ve taken it upon myself to enroll him in dance. It’s just that, he does have the mild EDS traits, he was the one referred by the pediatrician, and yet he wasn't given more than a 5 minute, evaluation and because his traits weren't "screaming out" in severity, it was passed off.

The kid does have sensitivities, he has always had. I won’t elaborate, and I see the point of not making a huge fuss about it to him especially. However, as a mother, this both sickens and infuriates me coming from the angle of untrue things that are written, affecting him. If I could say one thing to that awful woman psychiatrist, It'd be "effectively blacklisting a six year old child takes your already obscene structurally violent antics to a whole new low!"

I don't want to have Ehlers-Danlos, and I don't want him to have it or anything else we might have instead. I'm not somehow getting off on wanting to have it, or for my family to have it. My kids have me genes and I can certainly see that. Early intervention is so much better for EDS and other collagen/soft connective tissue disorders, so the kid can get the OT and physic to develop muscles better and thus injure less.  Like I said, ballet is good.

I am too angry to go back to my GP, so it’s time to find a new one…but how of course. There is a massive shortage, and it’s very hard to find a good one. I feel that the relationship with my GP, which went awry, may have spiralled into what happened.  I feel it was he who "assisted" my ending up in that position in the first place, by giving his “feedback” on his experience with me.

The long story short; the guy never believed me or interpreted me properly. It was three years of hell, and I don't doubt he may have shared what he thought of me, which influenced what then got written. That's my instinct, but I have no proof though.

I am not just being paranoid, many of these things are really happening in some way of another. My father is a lawyer, he’s seen it all, and he knows full well how these people “circle the wagons” in ways unfair to the paitent. It's just hard for me to pinpoint specifically when and especially where, once again.

I have strong intuition, but still I have social "blind spot" areas versus my instinctual savants. It is a scary paradox to have to endure. I had been right all along, and it was confirmed in the endocrinology appointment. That confirmation was very upsetting and horrific, actually. I found that my "imagination" was real when, in that appointment.

I tried to say "it's my aspergers' that has me explain things in this way" again, her verbal response was "we're not even sure if you have aspergers' that's what the psychiatrist said on you file and it's in the public system." So my instincts were right, and I wasn't being paranoid after all. I was trying to tell myself to “chill out, it couldn’t be that bad…and so were others… but here we were, it’s true.” It took me days to recover form this shock.

Being falsely accused and wrongfully understood feels awful.

I watched my mom nearly die of cancer when I was 14... after not being believed, and being badly misunderstood in her attempts to describe her ailments, for years of feeling unwell. She had a bone marrow transplant in 2001, and is alive today because of it. That was very lucky though. She was almost to be transferred to hospice, when they found that match. She dealt with what may have been FMS for years before then. She had many similar issues to what I have now. How would this not affect me?

What this woman wrote about me, in lieu of that, was really mean and cruel. It nearly broke me apart. I was already afraid of not being believed, hence over explaining myself. All I was asking for was compassion and help for chronic pain. People don’t know how to read between the lines, when autistic people try to communicatively ask for help. This is the problem, these clinicians do not understand the quirks and differences involved in how autistic people communicate.

Entry 74: How Did It Happen?

I put myself in that room: The room where I ended up experiencing one of those worst beaurocratic attacks that I think has happened to any autistic person in modern times. Honestly, that’s how I feel. Even though I was wary, I ended up making the gutsy move of posting the report on SSABU, the blog in which I created for others, for these purposes. I omitted names, and in this my dad (a lawyer) said it was safe. I know it’s garbage, so I have nothing to hide of be ashamed of. I wanted to make it known, just how awful someone like me can get misunderstood and treated in the system, when they willfully try to “stick up” for themselves. It the principal of this, whether this was about me, whether it happened to someone else. I mean that.

I will be dealing with it soon, but not in court. I will go back to the beurocracy I think, and make an application to have to removed, because it isn’t true, and it’s not okay. I may contact my local MLA, when I’m ready, which will be hopefully in the fall. I feel that they would agree with me, based on all my evidence. I would hope that Canadian officials would support me in this. How did this even happen? This is he gist of how:

I put myself in this room actually. I agreed to it, when it was suggested that I "speak with her (omitting name), because maybe it'd be helpful"... but it felt like a setup, and was only "helpful" at nearly breaking my newly regaining confidence, still fragile and healing, battle-scarred soul apart...all over again. There was already a preconceived notion when I walked in that room.  That’s how it felt. Ignorant impression of me had been already shared with this psychiatrist woman. That's how it felt, and it gave me this fight or flight defensive whence I felt the need to explain myself. This was all used against me.

The "assessment" didn't feel like a typical assessment at all. It was weird. I was in a vulnerable state. I describe it all in my book. I can't do it again now, it's too traumatizing to think about. Basically, it felt like an interrogation almost. I reacted too. I said some things that were badly used against me, whence they were misinterpreted and twisted around. This was especially because I stood up for myself when she attacked my autism diagnosis.

I lost my cool when she looked at me with callous eyes, and flippantly uttered “so, what makes you think you have ‘aspergers disorder, dear.” I then heatedly informed her that she clearly seemed to not know much about high functioning autism presentation in females. I got punished for that, who had the mere bow and arrow, and who had the machine gun.

I told her women with AS present differently, they can be very verbal; she wasn't listening. I was the stupid patient, how dare I, right? How dare I try to educate her. So I then said I told her I didn't want to discuss it anymore. I asked her to stop, as well as to stop asking me all about my past, and hence opening up old wounds and memories I wasn't there to elucidate about.

"Elucidate", actually, that's a word she used in her attack on me. She said "most of the time was spent 'elucidating' her (apparent) multiple medical conditions.” Well yes, that's because I didn't want to "elucidate" on what I wasn't in there for, and did not desire to do.  In addition, she asked me to describe the nature of my conditions. I described them to her, from my perception, in a way she was simply too ignorant to understand…particularly whilst holding preconceived notions.

I didn’t want to be on there for a “reassessment” which include opening up all my trauma, and I told her so, as I tried to explain what the true nature of my most current challenges are. She looked really pissed off. I guess she was angry she didn't get to do her "fun thursday freudian analysis" whence she is able to claim herself as a God upon. I almost felt a snake hiss throughout my body, and inside I shuddered. I felt goosebumps while trapped in the room. Again, this is why I acted defensively.

These ignorant people are so quick to pathologize...sometimes it's just beastly. No compassion, no thinking outside the box with an open mind, no compassion at all. I am not a perfect person. I've had my challenges, some of which I am even ashamed of. I struggled with addiction. I medicated what I then didn’t understand. I didn’t know how else to cope. It was not to illegal things, in my case. It was things that were pain and anxiety killers, that were legal too, as well as commonly accepted in society.

This of course was why it was so easy to access and lie to myself that I was just doing what everyone else does anyway. In addition, I used diet, exercise and food. It’s personal though, and I don’t want to elaborate too much.

I never thought I'd find myself defending such a thing though, and yet she said I lied about that too!  This part is laughable because everyone whose known me personally, and seen what I've gone through, particularly my husband, saw me in the midst of these battles. They are disgusted and outraged that she would suggest I lied about them.

I've been through a lot. I've made mistakes in my past, before I understood what was going on for me, let alone was able to process any childhood trauma. I tried to navigate through life, whilst hardship, half blinded in many ways, by my unknowing autism spectrum condition. I was, in addition, traumatized by my childhood and adolescent events.

I unable to process much of what was both inside, and coming at me so rapidly. I felt like I was perpetually drowning; I grappled and dog paddled for dear life. I was internally terrified, running myself dry, and medicated on the occasions that I just couldn't take it anymore, in addition to the challenged with autism that I didn’t understand. It was a lot, and I felt like if I lost it, I would (like Rudy Simone said in “Aspergirls”) “wind up in a place I didn’t belong.” The thought of this terrified me, so I did a lot of blocking.

I was in desperate need to be alleviated of many things; anxiety, overload, social and identity confusion, emotional pain, lack of ability to adjust to change, insomnia, and the list went on. When I'd reach the point where I thought I might snap and end up somehow I consider to be almost scarier than death itsself (like a mental institution) I ended up reaching a point where coping was backfiring on me, and that's when I discovered my autism.

So, in lieu of this, how dare this woman knock someone who has worked so hard to recover and reclaim life, and is trying to be preventative in making sure that doesn’t regress. It's like Dorothy on The Yellow Brick Road coming across a road bump, crying over it, and then those cries stirring up a cruel attack from an blackhearted evil witch, instead of a scarecrow or tin man helping her dry her tears and encouraging her to walk on. Strange analogy, I know. I couldn’t help myself I guess.

Anyone can imagine why I wouldn't want my rightful autism spectrum diagnosis to be questioned and attacked, after going through all of this. I wasn’t willing to hear that crap one more time, I'd had enough. I went in there, whence being told it would be a "good idea" to talk about how I was having difficulty adjusting to my complex health challenges, how I was perhaps over obsessing because I didn't feel supported by my GP, and how this was all causing me more pain and grief in which I wasn’t properly managing.

All I wanted was some help for that specific issue, not to be put through another entire diagnostic assessment that I did not need.  I was trying to say "excuse me, I already have a diagnosis I accept and identify with, and this is how I'm being affected as somebody with that diagnosis, as well as perhaps it's comorbid features; so can you help me and/or write something to my doctor indicating I need more support?" Not only did that not happen, but the worst possible thing did...the opposite.

There’s one more thing. I said something to this woman that got her angry. The truth of the worst thing I said to that woman, the thing I believe "got me licked” I have not before uttered this. I hadn’t considered the magnitude of it's importance:

So, there I was in that "interrogation" room. I could sense what she was doing, and again I was a cornered rat. I felt like a cornered rat before a hissing python wearing a superficial demeanor that I could see through. In the moment, I spat out what I did; it was because I saw the python before me. So then, in lieu of the building tension, I lost it completely. Only for a moment….I just couldn't bite my tongue!

I was too short, under the circumstances. It happened so quickly, but all I remember is flippantly spitting something out from my lips. It went something like this;

"Look, it's really different in females, not enough is known! I worked really hard to finally get my Aspergers' diagnosis, and I did not come in here for you to go and take it away from me!"

So that's it folks. I feel that could very well be why she did what she did. She perverted all the reasons why I said what I said (and if you've been through similar. you know exactly what I mean) into a "she didn't like being called on her facticous-ness." Well, all I have to say, in order to descriptively deem this, are a couple things. One is, people who are snaky, personality-disordered individuals themselves project that onto others and call the kettle black, and two: terribly ugly structural violence.

No, I was not there to defend my diagnosis, I was there to ask for help for my chronic pain and health challenges, whatever they are; "fibromyalgia syndrome" as it stands. So, I got frustrated when instead of being met with compassion, I found myself being interrogated. I reacted. I was tired, I wanted to go home by that point. I realized that maybe where I was just wasn't the right place for me, though I had honestly, truly and naively thought it was initially.

I was over loaded, I was tired of putting on social performances because at that time I was still in a phase of "feeling obligated" to "perform", and I did not yet understand another way to "be" with people. I still don't, but at least I'm in touch with how I can modulate this and understand my limits better. Even this was pathologized in her report, because... how dare I. Right? How dare I attempt to remind her that she wasn't being helpful, and try to describe how it is that I do need help.

It's truly unbelievable, how she takes my autism and makes it look like some horrendous and monstrous pathology.  Well, but it is believable considering her RateMyMD reviews, though.  This woman has done this to others. Regardless, to look at it like this is to look at it from a horribly sick angle infiltrated with cruel and destructive cynicism.

Psychiatrists who behave this violently really should not practice, because people get badly hurt.  This is not okay. Yes, people get so badly hurt like this when they are already vulnerable and truly in need of some real help.... but get proverbial smack upside the head, instead. I was trying to defend myself from getting hurt ever again, but how dare I.

Since I was not entitled to say "I have taken enough abuse from this system, I am not here to get messed with again, I just want some help for this particular issue" I got punished. I “got gunged” as my dad put it (knifed in the back.) I got punished for trying to stand up for myself...and some. Frankly, it seems rather sadistic.

The interview was almost set up in a way where I could be prompted to spit out the kind of words that could be used against me. This is so easy to do, to an aspie, who says things in direct, literal context when prompted with a certain kind of questioning especially. How many aspies before me have been falsely accused and framed using this tactic? I bet many.

That's how the questioning was literally set up. Furthermore this woman is actually known for doing this to people. She has done this before; I have read it on the RateMyMD website under her reviews, which were very poor, despite her surrounding staff thinking the world of her. Once she closes that door, the fangs come out, particularly if you challenge her.

How can society give and perpetuate these kinds of people the power that it does? Well, I know why, but this must change one day. The hierarchal-structured healthcare and "helping profession" systems need to at least start being regulated by much higher quality standards for human ethics. They should not be allowed to enact this kind of severe structural violence; and they should be called on it if they do. Otherwise, it's not only abusive, but highly corrupt.

Why, in Gods' name why, would the system let such a person work and act as "help" among people whom are already so vulnerable and challenged as it is? Maybe it’s because she can easily manipulate her way into making any of her actions acceptable, simply because she holds a "doctor" title? Again, that is based in a worship of hierarchy so severe that it is completely illogical; and therefore (once again) absurd. Yes, that's how much power people give to hierarchy. People and the system allows these "professionals", in fact gives them a license, to be as narcissistic and insidiously cruel as they want to be. This is just wrong, yet it's everywhere. It needs to stop. It starts with talking about it, and people sharing experiences. This is why I've created the communal blog in the first place.

As a side note, I do know that if you stroke this woman's' ego and let her be a God, she will often treat you so well, and flatter you so much, that you'll think she's super wonderful. She's not the only doctor like this, not in the least. Many are, it's like being in the movie Patch Adams. Most of her staff and coworkers in that entity think she's great. She waltzes in like some sort of idyllic Joan Crawford, dressed professionally crisp, calling everyone "dear" in a manipulatively warm voice. Yet I saw the snake in her eyes, and I felt like a cornered rat in that room.

Even when she tried to compliment me on my purple scarf, by uttering "you look lovely in purple, dear" I felt a sting from her energy. I felt violated, because her energy did not match her words. So the cornered rat reacted, when she could instinctively feel an attack.  I’m very sensitive to underlying currents. Then, the rat was met with a cold-blooded python which engulfed and smothered her attempt to defend herself; via the razor sharp pen. There are many snakes working in this field, doing these kinds of things to people.

One day, I would like to see her held accountable somehow; this is warranted justice.

I know I sound tough, but I am hurting. I’m sickened by this. My frozen tears are turned inward most of the time, so I can “keep on.” Truly though, this thing has been doing me damage inside. It’ll take a whole to work through. I am greatful to no have a councellor that understands, who gets autistic people, including women.

So, I have been trying hard to rise above, though I’ve been bunred for sure. I now don't freely talk about all of my symptoms, anymore.  I have no trust. Not after how it was “described” that I described them. She lists as she "heard" them, and in addition written back out in a twisted way that is supposed to incriminate me.

However, it doesn't necessarily work with those who are smart, because the description she ridicules into pathology is pretty well a description of classic fibromyalgia syndrome and perhaps other nonspecific autoimmune challenges to boot. It's not really all that "sensational" although she says "she went on, 'elucidating' (there's that word again) about her multiple medical conditions"...Oh please! She writes I say I have IBS "my whole life." Yes, autistic people have gut issues since early childhood, and even as babies (colic.) How does this make me seem "factitious", and more importantly, why the hell would I want to "fake" the embarrassing symptoms of my IBS? FMS itself is a systemic condition that affected multiple areas! How is this "factitious?" It's not.

All I can do is keep believing in myself and in Spirit. I basically have to detach a lot. It's the only protectant I have. Autistic people, and those with trauma, are good at doing this because we actually can get overloads of emotions and feelings about things, and they can be very intense. So intense it can make us sick, so we develop this "thing" where we can cut off, when there is no choice. However, this tactic has a lot of negative, backfiring effects. It disallows from processing trauma, it's almost like the brain is in "freeze" mode, which is part of a trauma reaction. Later can come the blocking and flooding: the PTSD. This thing had unfortunately re-triggered much of the PTSD I was working so hard to overcome, in a really brutal way. It's going to take me a lot of rehabilitation to recover from this.

So, I've trying to keep level and move forward, regardless. I did have a bad meltdown after learning what I did in that endocrinology appointment. I was devastated; I was knocked down again. I was being told that surely the report couldn't be affecting me that much, but now, my worst nightmare has been confirmed. One can imagine how this could make me feel. I have to get up and fight. I have to prove my case eventually. It's not just for me, it's on behalf of all that get misunderstood like this...especially autistic people. The reason why I'm sharing about this is because of awareness, not attention as could be assumed. That is the truth, and there is now nothing more to say.

-Rosie

-Scarlit-Rose Ashcraft 

www.scarlitrose.org