Monday, May 6, 2013

Breaking My Silence


more recent update:

The actual report from "Breaking My Silence" (minus names)

Dear Friends:
I am copying and editing a comment in response to a question which prompted me to break my silence about the painful event that occurred a couple months ago now. I have been trying for a few days now to find the right words, and this is the best I can come up with. I did not, and could not, process it properly. It has nearly broken me apart and threatened to shut down what I have, and was/am working towards. However, I have chosen to not allow it to destroy me any further. I now realize that is actually a classic example of an Aspergirl in a not so ideal state, getting misinterpreted and judged very harshly. I was too ashamed and hurting to see it before.
It was a hard hit to take, when I was and am (more than ever since this setback) admittedly still not through my inner conflicts/traumas as it is. Outside The Box is and always will be part of my mission to heal, make reasonable sense of things; the fact that I'm autistic and that many of us are (and what this means) and to ultimately find peace. For others, our Au community; to help others, and in turn help others...

I was having a hard time mentally dealing with my health and chronic pain issues, and not coping all the best. I was falling back into medicating. I was frustrated. I felt so held back... helpless by a lack of finances for alternative healthcare that I need and isn't covered, no support in the public system, and scared by it..albeit trying to put on a good face. On top of that my extend family members were getting to my head and being toxic, which is complicated and in which at the time I didn't quite see. I went for help and received the most extreme harshness one could ever imagine. I was not doing so good in my presentation there, and this was (rather than understood) judged and misinterpreted in the worst way possible. I think I am ready to share this. I feel I need to get this out, in hopes of getting some support from Au community/friends. It's not just support for me, but support for taking a stance against this kind of thing. I am (maybe naively?) trusting that people, especially those who know and love me well enough, will get my true drift. My brain lacks that theory of mind, but basically I think I'm just being a kid looking for a hug or something...some support, as well as eventual justice *sighs*.

In the mean time, peace has to be made with myself and the universe. I don't feel I'm trying to victimize myself really..I'm just trying to share what's not okay. Like the communal blog, It's Not Okay; which I started because of this. It's for aspies to share stories of how they have been misunderstood too. I get that I sorta got myself into this; but I was pushed from lack of support even before this attack. I just don't understand why, when somebody sees somebody struggling, they don't offer understanding and compassion. This is the way I operate, but I guess many don't. *sigh* Anyways, Here what the comment spurred, containing what happened in march:

I have a lawyer on board to help me at this time, and he's my dad. Although he is retired he can still advise and support me; it's for a very serious issue regarding a brutal, defamatory and incredibly untrue misdiagnosis. It was made by a psychiatrist, whom I had only agreed to see because I was told she might be "helpful" to me ie. how my health and situational stressors have been affecting me. Instead, she basically shot me in the f*cking leg which, in the position I am in, seems pretty sadistic.
I'm having a hard time with the fact that someone could do that to someone else who is asking for help and already weakened/reaching out. I feel it is lacking empathy to the point of cruelty... (and they say aspies lack empathy??) It's the pot calling the kettle black really. It's actually mind blowing. There's a battle before me; that I have to fight without fighting in a way that'll paralyze or destroy me first.

I need removed something very serious, untrue, and safety compromising from my file. I have to share it now. Observe the horrific "report"(minus the actual name of the "professional" responsible) which I guarantee you'll be disgusted by (if you know anything about ASC especially) here:

So this woman implied, on my public file, that I am a sick in the head; a narcissist, pathological, borderline who has "factitious disorder; of both the physical and psychological type." It means I am "fake"; I am not real in any way. I make up all my health issues (umm..i have actual proof of them, including X-rays that show injury hence chronic pain) and may go as far as to do thing to make myself sick on purpose. It is described that I "enjoy talking about decontexualized medical information on which "she believes to be expertise" (because I talk about holistic health and the autoimmune autism connection.) Yes, I was branded a fraud and a fake; I have "created my own fantasy life of now and the past, of being "A girl outside the box; with late diagnosed aspergers' (in which i have convinced myself that i have).
Even worse; I have faux's implied that I've made in my "sick head" a fake past of having been through "hardships" including sexual assault. It's written that "she says she is 'suffering from the Triple Ms in which she deems Misunderstood, Misinterpreted, Misdiagnosed"...the term that I had coined (not to "think I'm so smart") to describe what aspies like me go through. It, and I, am completely ridiculed. Basically, it's written that everything I really did go through and have been earnestly trying to heal from is a lie and never f*cking happened. Everthing that I shared from the heart to this woman, in trust and naiveté, has been perverted in words. Words that went into my heart like a dagger.

Anyways I won't repeat them all, or I might throw up. It's actually caused me to have a month long meltdown in which my self care has been extremely challenged. I'm only human. I'm a pretty strong person but this thing has driven me (almost) over the edge. I created a blog called It's Not Okay, because of this. It's for aspies to tell their horror stories. But, if I break apart, I have nowhere to go because the psych facilities have this right on their file, hence you can imagine how I'd be treated. It's the same if I had an actual medical emergency. Just to top it off, she went on to say something horrific, because i talked about gluten/dairy free diet, and the kids' maybe having Ehlers-Danlos (in which the paediatrician told me; they are referred to genetics by him.) She wrote
she is "concerned about how I extend my need to be sick onto my children and could be developing munchausens' by proxy." This then extends her defamation to my innocent kids, because if something were to happen to them, and I needed to take them to the hospital for real; this is how the situation would be erroneously treated.

I'm finally breaking my silence because this is outrageous and I am preparing an addendum file package which includes actual medical proof that I actually do have fibro, athritis, and EDS; and hopefully too, a support letter from my paediatrician (gosh the info i told her came from him not me!) after we see him again in June.
I have not one, but 3 reports diagnosing and confirming my Aspergers. I have acceptance into a support program which is hard to get into, and only if they confirm you truly are eligible. Honestly...this person went way too far and I believe justice has to prevail somehow. I am actually going to my fathers' this coming week for 5 days.
He lives by the beach, and I need the powers of nature at this time, to recover enough to try and regain some composure and process this hellish ordeal in quiet. This is so I can be in a better shape for my family.

We are putting the file together then because I got very close to a serious breaking point. It'll help me feel like things are moving towards righting this wrong, and be calming for that reason. I'm a pretty strong person but I think most people would agree that the way I feel is a bit understandable?
I have to remember that I know the truth in my heart, and that if I the let the anger, extreme hurt, and grief which I have get turned onto myself take me down any longer; I will not make it. So I have to get up and continue on what I was doing, and what I love doing; being an Au self advocate, a mama, a writer/poet, and sharing my true story of experience, and help others.

I have to TRY and PRAY to do it in love and peace, and without "fighting fire with fire." The only way for me to get through this is to basically be Ghandi or something. I have to have faith that I'll make it, and that this will get turned around. I also feel I should use this as a horrific example of just how badly an Aspergirl can get misunderstood and mistreated by the system. I know I made some mistakes myself. First of all, I naively overshared with her thinking she would be helpful to me for real. I was also in a slump and an over obsessive depression regarding my health. I was feeling that I was getting nowhere with my Dr; support from him, or rather the healthcare system (which i need to accept will never be an option for healing, it's just about pills.) I was perseverating. Worst of all, I have sensory processing issues that i'm only beginning to understand. This makes it difficult, sometimes, to determine more specifically where my pain is coming from; leaving me to try and guess. It's complicated but I come by that honestly...this is not pathological! It at least partially based in reality; though sometimes things may feel worse than they are. In retrospect, some things may feel less severe than they may end up being; and this has happened before (and, it's traumatized me into hyper vigilance).) Honestly, I really was expecting her to offer me actual help and guidance; not a dagger wound in which has, over the past month, become infected. I have to survive this. It's time to take a few days at my dads', by the meditate, pray, be healthy again, and trust in the universe. I have no option if I choose life, and I do. My kids need me, and I need to keep doing what I was doing; because it's the TRUTH. I can't lose what I had. So there it is. This is the first time i've found words for it. Words for this absolute nightmare which I felt like I could never wake up from. The first time since it happened...and I needed to get it out.
FYI: check out the reviews of the woman who wrote this callous "report" (the notes of the actual report
*Unfortunately, I have removed the link to the RateMyMD website, where there are many complaints/stories from other people whom this woman has terrorized. As much as I am tempted to share that I am not the only one whose been abused by this "professional," I have decided that I have to refrain from mentioning the name for my own safety.

What I taped a few days after reading
(what I taped 5 weeks after reading, when I decided to go back home as I had to go to my fathers for a week) "Ready To Heal" (well, I wasn't..but I tried)


  1. girl outside the box, our aspergers can give us intelligence and above average ability to think outside box. it doesnt necessarily make us wise though , that is why becoming a christian is what will save us . true for everyone. jesus IS the light of the world and THE healer. and He supplies all our known and unknown needs. All of these hurts will be healed if you lean on Him. Go inside a church, worship him, speak to HIm, tell HIm EVERYTHING, let Him be your teacher and guide and ask Him to take control of your life. let the HOly Spirit be your counsellor and discern what you share and dont share with strangers. Take comfort in knowing that Jesus was the light of the world and He was misunderstood by His own disciples, crucified by His own people. A prophet is not known in their own country, and the lot of the aspie child is a cross of being misunderstood, judged and not known by people at large . Cling to the cross and rejoice ! ASk Jesus to teach you to love the cross and to give you the strength to carry could be one of the best prayers you ever make. GOd has given you this cross for a reason and to fulfill a particular purpose. GO well

  2. not saying you are not wise, just saying that some times we can be too intelligent for our own good, and when we are faced with the atheistic satanic powers of the western healthcare system we need to be very careful in discerning in what we say and to whom. the god of this world is satan . atheistic psychiatry does not recognise that the "psyche" is the same thing as the soul, and what we do to our brain chemistry affects the soul. , as in psych medication. instead find a good naturopath, not a dodgy New Ager which is demonic, but a CHrisrtian naturopath, put your faith in flower essences , homeopathy and herbal and vitamin supplimentation to address imbalances, its the ONLY way to treat a person. but western healthcare is all about symptom suppression, and never about treating the underlying cause, ie holistically.. how can you solve a problem if you are only dealing with one side of the picture? no logic in that.. but you tell it to this bunch of atheists and they will call you crazy...

  3. i agree with you about many many things there...especially the healthcare stuff; and i do believe in Jesus also. i just am not christian per se...not religious i mean. i am definitely not atheist either. but thanks though. i get a lot of what you're saying and you're right. this is how i feel about spirituality though.

  4. (1 of ...) First of all thanks for having the bravery and strength to post this.
    (apologies for splitting - my reply got *long*, so it will be in parts - as reply to reply ...)

    Good to get it out there - "off your chest", etc. Important to communicate what you went through, how you feel and it impacts you, and so on. Best not to keep it (all) "bottled up" - that tends to not go well. And even to the extent sharing it - even communicating - may be quite the challenge, good to get it out, and as you feel appropriate, "out there", as best you feel you can.

    Doctors are only human. Even if/when they've the best of intents, they screw up - and sometimes very badly. They may know quite a bit, but they don't know *that* much. And they quite get stuff wrong. Much as Medicine is "science", it's still a rather primitive science. I'm oft inclined to think of it as much, perhaps even more, art, than science - still such a very long ways to go. And that can be applied at least double to psychology, and especially psychiatry, and probably also at least much if not all of neurology.

    Unfortunately many doctors also have an attitude problem. E.g. in 10 to 55 minutes of diagnosis, of someone they've never met before, and at most merely skimmed - if even read at all - their medical history, many have the unfounded confidence to not only make a diagnosis in such little time, but to make and proclaim it with great confidence, and even often contrary to any and all prior diagnoses and frankly contrary to actual evidence - which they may quite fail to adequately consider and review. Some will fancy themselves quite the experts - even much "above" their colleagues in making such a distinct and "outstanding" diagnosis, believing themselves correct and that everyone else "missed it". They like to think of themselves as that exceedingly bright, perceptive, expert, etc. one that catches and accurately diagnosis what everyone else "missed". Unfortunately most with such attitude get it wrong - often even dead wrong, and exceedingly few ever produce the correct diagnosis in such circumstances, but most practicing and acting like that consider themselves to be those precious few.

    So, yes, doctors - quite human, and quality varies a *lot*, as does their particular areas they're rather to very good at, and also rather poor at or not good at at all. Much better to value those that have the humility to know what they *don't* know, and to very frankly and candidly admit it and their uncertainties. One doctor I quite liked from many years ago - first time I saw him, diagnosis, treatment ... sent on home. Get a call a very short while later. He'd conferred with colleague, got at least the treatment *far* from optimal - quite unsatisfactory - told me to get right back in to get that properly corrected right away. I quite liked that doctor - that he wasn't sure, quite kept it in mind, conferred with colleague, and very immediately contacted me to admit his error and to work to correct it. Unfortunately most doctors wouldn't bother to do that - or admit to such an error.

    1. (2 of ...) Don't let a (mis)diagnosis or report like that prevent you from getting or seeking treatment needed for you or your kids. Most doctors and the like, with only one such contrarian report in your "file", will aptly and quickly figure out what the truth is - or at least a "good enough" approximation. Many won't even have the time/resource (or humility) to read through most or any of those reports and history anyway - they'll start from scratch at presentation and work to figure things out from there and take in additional information (e.g. history, reports) if and as they deem it fitting, worthwhile, and relevant. And should you encounter a doctor that seems highly skeptical and perhaps read/skimmed that report, you could always briefly tell them that yes, you know of the report, and that you believe it very incorrect - and to just review all the history prior to that, including, e.g. multiple independent diagnoses of Asperger's, X-rays, etc., as may be applicable.

      Remove it from the "public" record? Might be better to *leave* it there, and instead work, as relevant, to have it discredited and contradicted, in full or (major) part(s), by relevant review, other evidence, updates, tests, history, etc. Why? Well, were it made "disappeared", there would remain some risk that similar error may repeat, whereas if it's left right there, but clearly contraindicated by overwhelming evidence - it remains there but mostly or entirely discredited, and thus hopefully significantly less likely "same", or quite similar misdiagnosis would repeat.

      And if and to the extent you can stand it, might even want to go back to that doctor *again*. Yes, not at all that you can or do trust that doctor - nor that you should trust that doctor. But, perhaps among other things, give them a chance to correct their mistakes. Help them understand how damaging their handling of you was. Even if you can't convince the doctor they got it totally, or even quite or significantly wrong, if you can get them to reasonably understand how damaging their handling of you was, maybe - hopefully - in their compassion, they'll be much more sensitive to that, and less likely to similarly harm others, or further harm you in such. And as feasible, generally better to "work with", than do "battle against" doctor(s) - even if/when they get it wrong ... even highly wrong. They may even quite *like* you helping them to be a better doctor - at least if you go into it with attitude to assist, rather than contradict and do battle.

      And that doesn't mean you can't "fight" or also fight the doctor and their diagnosis - particularly if approaching them directly is quite untenable or infeasible for you, or even after meeting again, you find the results continue to be intolerable and exceedingly unsatisfactory. E.g. can contact the doctor's superiors and the like - let them know of your experience, most notably how your handling very much negatively impacted you, and also briefly informing them also of why you believe that doctor's diagnosis and statements, etc., was both incorrect, and very damaging in its handling of you. Certainly can't guarantee that such an approach would "fix" it, but would likely cause that doctor to fall under additional scrutiny and review - which would generally be a good thing.

    2. (3 of 3 - okay, so it won't let me reply to my reply or reply again to my reply, so ...)
      And, "is the doctor right"? Well, "of course not" ... BUT ... Sure, some folks often get things exceedingly incorrect. But often there are at least some grains of truth to be learned from it. Try to understand how that doctor reached those conclusions at that time. How were you presenting at the time and to that doctor? How much (if any) of your history, tests, diagnoses, etc. from earlier did they actually read and review before making that diagnosis? What if anything were they told by other doctor(s) when you were referred to that doctor? Who knows, maybe just one misleading or misinterpreted comment, in hand-off referral might have sent doctor totally down the wrong track - and perhaps combined with how you were presenting to that doctor and at that time, might have very much lead them to draw the incorrect conclusions. Anyway, as much as feasible, try to be objective and learn from it. Rather than look at it as "totally wrong", try to see it more as a (*very*!) different perspective. Even try and pull it totally apart - all its little pieces, every observation that doctor made of you, what they thought, how they put or thought to put all those pieces together. Fairly likely there are some useful bits somewhere in there to be learned. After all, "yet another highly similar diagnosis of the same" from yet another doctor isn't so informative. A radically different perspective - even if it's mostly quite an incorrect interpretation, may have some valuable bits that can be learned from it. Perhaps some wee bits or aspects that doctor did see, that perhaps others didn't see, or perhaps *also* applied another perspective to it that others should have tried - even if not fitting - and perhaps found at least some insightful bit(s) within that harsh mess of a misdiagnosis. And even if "totally" or mostly wrong, again, even some elements of it ... well, if not "true", perhaps at least some truth or grain of truth to it? E.g. *lots* of focus - "special interest" on health, alternative treatments, etc. When/where is the border between "special interest" and a focus, beyond which, becomes counter-productive or problematic. Are there not at least some slightest traces occasionally past that border? And if so, where?

      Sorry to hear of your ordeal and the damage and pain from it. But hopefully from it all, you emerge as a stronger better more well informed person, others learn from it too - and even that doctor hopefully learns and improves from the experience.

    3. thank you for this Michael. meant to tell you earlier, thought i had.

  5. There are a lot of very good comments made by Michael that make a lot of sense. My knowledge of the US medical system is limited (being UK-based), but I really hope that you are able to get the misinformation overlooked, if nothing else.
    I've seen a few of your videos now and admire the work you do in being an Aspie advocate. I self-diagnosed a few years ago and still find it hard to self-advocate. Long may it last and I hope you get over this blip soon.

  6. thank you <3 i'm slowly overcoming and trying to move on, eventually get justice