Monday, April 14, 2014

Presenting "The Fork Theory", a "Spoon Theory" for Autistics and others with limited social stamina

The concept of The Fork Theory was originally named and thought up by Tanja Guven. I liked it so much that I told her I'd adapt it, and we'd do a video together explaining and exploring the concept. (coming soon)

To understand The Fork Theory, one would have to understand The Spoon Theory, by Christine Miserandino

 http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Christine shares that Spoons resemble a task that takes effort and physical stamina, when one is limited in it due to being limited in energy. The energy limit Christine talks about is related to suffering from a chronic health condition, which can include chronic pain and fatigue. There are many chronic health conditions that cause people's "Spoons" to be limited, such as fibromyalgia, arthritis, chronic fatigue syndrome, lupus and other autoimmune disorders, connective tissue disorder and many more. A person can evaluate how many spoons it takes to do something, and how many they have "for today" depending on how they feel. For example, folding a small basket of laundry could take up a spoon, making a full meal for your family could take up two or three spoons, taking your kids out to a busy and crowded easter egg hunt could take four or five spoons, and so could gutting and rearranging your entire home office. In a nutshell, spoons represent the use of physical stamina. So, you may ask, what do "forks" represent then? Well; Forks represent social stamina. 

I feel that it's time I brought this one out, because it concerns myself and the ways I'm both able, and unable, to connect with friends/fans/subscribers. I've been limited in forks many a time, especially lately. I've continuously gone to the extent of going over my fork limit, in order to please people. More often than not, I then find myself unable to carry that through; suffering "crash periods" and shut downs. I cannot do this anymore, as it has had a negative affect on my health, which has been declining (for many reasons.)

I have now come up with a way to continue to help people, but also preserve my forks and thus take better care of my body, as it is now in great need. I am now developing a new system for connecting with folks, and continuing the service work I care so deeply about. I look forward to sharing this new system here: (coming soon)

I think The Fork Theory will be a very useful tool for those of us on the autism spectrum, those who are introverted, those who have PTSD which causes them higher levels of social anxiety, those who have other neurologically affecting conditions (as I also have, in addition to my autism) and/or head injuries which can cause generating language to require more effort than the average person, etc.. All the above is especially pertinent when we're also dealing with chronic health issues, especially chronic fatigue and pain. That's when the lack of spoons can directly relate to the lack of forks, though it may not always be this way.

So, what could a Fork, or multiple Forks, represent? It's up to each individual person to realize their own tolerance level, and their own scales of representation. I'll use my own scale as an example. For me, one Fork translates to making a necessary business phone call that is short, or answering a single and succinct question with a short, succinct answer. One fork is going to the bank, and having a brief conversational interaction with the teller, mostly in order to full fill what I require when there; but sometimes necessarily generating a little "small talk." As an autistic person, small talk is never my favourite. Two forks would be a more detailed comment on an issue of passion, in a group on FB. Two or three would be a longer, social phone conversation or 1-2 hour coffee meet up. Four forks would indicate an interactive group meet up with a handful of folks, a school meeting for my kids, or a detailed response message to someone in crisis with multiple, intimate questions about personal and serious matters (more about that one later.) Four forks would also represent this, here and now; a good and informative blog which may help many others. Five forks would be speaking and/or leading at an important event or hosting a party. Let's say I have only 5-10 per day, give or take (depending on how I feel)...and think about basic math. That's definite limitation, and that's how it flows for me at this time especially. If am am completely and totally out of forks, it'll be very difficult for me to even make that (possibly necessary) trip to the bank or grocery store. This is why ideally, I try to preserve at least one fork, to have in my back pocket, in case it's needed.

Though I don't really count interactions with my children and immediate family as fork-spending, it is more difficult to enjoy interactions with them if I have downright hit zero or am in the negative. If I'm in the negative, it can affect my mood. So I try really hard to not let it get to that point. Given this, one can imagine that my forks are precious to me, and needed for many reasons. I need them for my family (my children especially) and I need them for my work, which I take very seriously. I feel it's purposeful and can progress to fruition in making a difference, if I apply myself consistently. If I use up too many forks on that one detailed, personable message, to one person... I have become too depleted to be as present for my family as I'd like, and to apply those forks to something that can help many at once. In addition, because my levels of empathy are intensely high, I can burn up forks engaging and taking on that persons' personal conflict.

This is especially true because it reminds me of my own trauma, for in which I am not entirely healed. For this reason, I too need to "stay in the solution" as opposed to in the emotion, just as much as the other suffering person does. I have discovered that it's so much more empowering to give people tips (and in turn remind myself of these tips!) on how to effectively swim across that "choppy ocean channel", as opposed to urgently paddling out there myself, to rescue them. Rather than foisting myself into an adrenalin fuelled state, I have realized that I'm more effective when giving people tips on how best to swim, and bringing many together (which is very empowering.) I can do this by writing blogs, publicly speaking, and posting in groups for in which we can all mutually engage. If we all went by these principals, as marginalized people who've been affected and likely traumatized, though still trying to recover, assert our rights and our place in these world.... I just know we could move forward like a fire-engine of love. When we are raising each other up, as opposed to tugging on each others' shirts, and even squabbling over it... change can really happen! 

Back to the "forks." In addition to the mental energy factor, I have to make sure to reasonably preserve my spoons too, and vice versa; or I end up with less forks than I need for important things. Autistic people are more likely to have a depletion of spoons affect their supply of forks, because for Au people it takes more effort to generate language and to speak... regardless of whether they enjoy it or not. This is because, we usually think in pattern sequences first, often involving more pictures than language. Although some of us can be very good at language, it does take more energy to generate. Using more forks than is good for my body (and this goes for spoons too) in one given day, can lead me into a "crash period" for a full day, or even many days after. This isn't a good thing for me, or anyone else in the position of limited forks. Everyone needs to balance their forks accordingly...or end up imbalanced in general. For people dealing with chronic health issues, for in which physical health imbalance is a key cause, this is the last thing that needs to be perpetuated. It not only hinders management and reasonable levels of recovery, but can completely kibosh it...and in turn any chance of illness remission. So, we must learn to balance both our spoons and our forks, for the sake of our own functional health management. 

Here's another example. On a day that I know I'll need four or five forks, for something high up or at the top of my priority list, I'll have to do little talking prior to that event or project, and rest after it, or go into the negative (which I'll explain.) As you can see, using up four forks on the one detailed, intimate conversation to one person only, drains me of almost all my forks for the rest of the day. This means, I won't have enough forks left to address a group, write a good blog, or lead/host something in a way that benefits many. This means, although I would love to address each and every one of you more personably (because my first inclination is to help).. I'm physiologically unable to. This doesn't mean I don't want to, or like to, set up some "coffee date" time with friends, but at the moment I am limited with it. I leave it for weekends in two hour blocks (three at best) so that I don't miss out on my family either. I'm just too busy and already limited in family time during the week, other than the odd exception. I sometimes feel frustrated about this reality, but this is the way it is, at this time. I have discovered this the hard way, which is my own doing, and I have agonized over it. I have scratched my head over and over again, trying to find solutions in order to carry forth what I feel is the purpose of A Girl Outside The Box, yet still preserve me. 'Cause without me, it can't continue on; and I want it to.

So, my energy limits need to be prioritized for addressing and reaching many people at a time (and for those people to then reach others in varying ways, in a chain-like effect.) This is the most steadfast way to create the change I want to see for the autistic community, and regarding other loosely interrelated issues involving health, the arts, and positive global reform. I'm so passionate about this endeavour, that I can't just walk away. I'm excited to unleash my new systems, which I'm working on now. I think they'll be much more effective in helping people and making a difference, than the way I was going about this before. I hope that everyone will help and support these new concepts (including a series of sub groups) and I think they will, after seeing how well they can work.

As a side note, I'd like to add that even able bodied people, who don't have particular challenges, will have a natural limit of spoons and forks. Though it's not as pronounced as those with relative challenges, or in autistic people, it's a naturally occurring phenomenon. Ultimately, when we "run out of forks" or are about to, it's time to go "shut down" and be quiet with oneself, as much as is possible. It's time to "go within", listening to music, and relaxing. If we're out of forks, but we have some spoons, we can quietly go do things like food prep, folding laundry, etc.. and perhaps with some nice music playing in the background. We can go for a walk by ourselves. We can go enjoy nature. We can do some art or music.

So, let's elaborate on additional examples of things that could cause a person to become low on, or to run out of forks. It's important to note that there could be both physical, and non physical causes. Physical could be related to spoons, such as a lot of physical exertion, which is especially draining for people with health challenges. Being very low on, or totally out of spoons, will often result in also being low on forks. This is, again, more true in certain types of people. Non physical could be; coming from a loud and boisterous party or another very sensory stimulating situation (for in which they had a prolonged exposure to), having encountered a high energy and talkative person whom they've had a long conversation with (though they may have enjoyed it during), or; they've come from an intense meeting. They are now depleted of forks, because they have used up a lot of social energy. They now need to shut down and "recharge" for their own health and wellness. This process can allow someone to regain their fork supply.

This is especially true for people who are either introverted, autistic (regardless of whether they do enjoy social interactions) and/or in those with sensitive health, chronic fatigue, and chronic pain. This is because these people can become drained from too much social interaction, more easily. Extroverts tend to gain energy from interaction, and therefore tend to have a much larger fork supply, unless they are very sick. Other causes of fork depletion could be that a person has just experienced a loss/is in grief and sadness, or is stressed and anxious about pressing issues. They may need to go inside themselves, in order to process these things. For this reason, they are not "in the mood" to talk. This can be true for all kinds of people. *Note to all: although I can be, and enjoy being, very outgoing and social, I am actually an introvert by nature; because I'm autistic.

Physical tiredness, or "lack of spoons" can often overlap into lack of mental energy for generating speech and expression; and therefore a "lack of forks." This is especially true for those on the autistic spectrum. While some neurotypical people (particularly the highly extroverted) may be physically tired they be able to sit down on the couch and have a phone conversation with their friend, citing "ahhh gee, I'm soooo tired, too tired to do the darn dishes! bah!" However, the autistic person will be likely too tired to verbally express those same feelings, (especially in a "typical" way that makes verbal sense) though they may have a small amount of forks to express with a family member or close friend. This will depend on their level of physical depletion. On the flip side of this, some of the more highly verbal autistics may have a different initial reaction to a depletion of forks, especially if there are still some "spoons." This initial depletions may cause a social "overload" (particularly if one "runs into the negative.") I like to this reaction the "melt-up." There are certain mechanisms that cause this to happen. In fact, for many autistic people, the depletion of forks may initially cause an "spike" in spoons. It needs to be "burned off" and "released" in some way. This is were stimming comes in. Similar mechanisms, as a result of social overload, may occur in other types of folks, though now stemming per se (which is fairly confined to autism and in some cases profound ADD/ADHD.)

For example, if spoons are remaining, initially spiked, and a person is in a state of physical hyper-ness, (and even overwhelming emotions) they may become verbally overloaded in their minds. They will need to "download" their script to a close family member or friend who understands them. They may need to "release chi", as Rudy Simone calls it, when she describes the need to stim. If verbally and/or emotionally overloaded, the "download" is one way to do this. The download may include a plea for help (if it escalates in intensity) and even an unrealistic expectation of "rescue me." The latter is in the case where the "download" is coming from a meltdown, which it can switch to from a meltup, if it is left to escalate for too long. Again, these internal processes are some of the neurological mechanisms that produce the need to "stim."

As opposed to "talking through something" with someone, "downloading"to someone (or even to oneself), appears more like "talking at someone" rather than to them. It is an especially autistic feature, though others experience it too, especially when they need to verbally "process" upsetting things. It can be taken the wrong way, as things like "selfish" and even "rude." What's important to emphasize is that this is not intentional. This process is to some extent needed, for the autistic person. However, it's also true that everybody is entitled to reasonable boundaries regarding how much they are able to handle of it, at a time. This includes all people, even autistics to autistics.  Again, people other than autistics may have somewhat of a need to "download" in their own way. A general example (in a non autistic person) could translate to being in a counselling appointment where the patient does all the talking on purpose, because they need to verbally rehash something and simply want that listening ear. After the person is done, the other party may respond with something brief, in a way that's helpful to the person. 

In an autistic person, it's a similar need, though the internal mechanism may be different. Though there may indeed be an intense or upsetting emotion, they may also be simply overtired and over-wired. They need to "download" before they shut down and go into themselves. I have done this before, with my husband and other family/besties (who are usually also autistic.) I find that some of this state is natural, but some of this may cross over into an extreme. The latter is often because of allowing oneself to become too socially overloaded via not properly managing Fork limits. When this state occurs to the extreme, it can be hard on the physical body and the mind. The only way to remedy it is to "spew" out the download in some way, and/or stim, then go relax. These aspects are all part of the challenges with regulation; which branches off into another topic meant for a separate blog.

It's an interesting phenomenon, what I call "melt-up" (as opposed to meltdown.) A little "melt up" is ok, normal, and "us." However and again, too much of it can perpetuate imbalance. In order to be sensitive, we have to try and make sure that the friend we are choosing to "download" to has enough forks of their own to receive it (whether it be a verbal melt up, or down, or just burning and intense question/s.) If we are needing another person to "bounce off of" we need to find ways to pause for thought on this first. If a "download" occurs in something like a FB message, and the other party doesn't respond, we must try and remember that they may be out of forks before we take it personally. As an important note, I am talking about "downloading" to someone else who you know understands you well enough to not pass judgement. Clearly, choosing somebody who you're not that close with, and is not likely to understand autism spectrum (due to lack of education, awareness, and perhaps not being able to relate with the particular internal mechanisms) is not a good idea. It carries a high risk of being received with misjudgement, and even annoyance. This is why I do not recommend it. It will only induce a feeling of rejection, for in which may be (in that particular case) truly warranted. This is never pleasant for anyone.

Back to our own friends, whom we know care for us...we must try to manage our expectations. We must realize that we can even look within ourselves, and to solutions, to find relief. The great thing about this fork theory is that we can use it as code, merely citing to that person "I'm out of forks, at the moment, much love, talk later" or if that person is really in crisis "I'm low on forks and can't respond at length for now, but I think you should do this (brief suggestion) sending love and well wishes, be well, talk soon." This shows loving detachment; the setting of boundaries based on one's own individual fork limit, while still getting across that you do in fact care. If the other person is not able to accept that due to their own sensitivities and traumas, then the one trying to set a healthy boundary cannot take on what is the other persons' issue. We can have compassion for it, but not take it on. In retrospect, it's important to note that there are many ways to preserve forks yet still be helpful, change-making and of service to important and compassionate purposes. I talk about these more in my next blog.

Listening to language involves the use of forks. Again, more so in the autistic. This doesn't mean that we should not listen. It means that if we are very low on forks, we may have to limit it, or even abstain for that time being. This is because, as opposed to the belief that we lack empathy, we often have an excess of it. This plays out as; we will really hear the other party. We will take it in... within our bodies, hearts and souls. In addition, our brains may take more energy to translate the language we're hearing into the picture-patterns we understand in our heads. We may be able to do this so quickly that one may find it hard to believe... but we're still doing it. For this reason, it takes we autistics more energy to listen, than it does for non-autistic people. However, we often choose to prevail in doing so, because we truly care and have a sense of social responsibility. The latter heightens when virtuous purpose is attached to it. Sometimes, if we're low on forks, we can hurt ourselves in this action (especially when we're also generating a lot of response), when trying to be loyal in showing that we care. This is when we need to lovingly and politely, but assertively if need be, guard. Again, it's not a question of "not caring" or "selfishness." We know that we care. There are plenty of alternative ways to show it into action, while still preserving fork supply. This is still do-able, even if we are physiologically unable to field many intense one-on-one interpersonal connections. 

On the flip side, if we determine that the other party may be low on, or out of forks, it's again best to "manage expectations"and thus not place unwarranted expectations on them. After all, many of us reading this can put ourselves right in their shoes, can't we? So, we may know firsthand that this will only make them feel badly. They, and we at times, are dealing with something that is physiologically involuntary. To overstep it causes harm to the health and well being. So, it's best to understand this by recognizing it (if we can), and finding another way to "download" that script. Sometimes we autistics can have a hard time recognizing anothers' feelings on the surface; though if we tune in, we can sense them, even quite intensely. This means, we can discern, or even ask permission, before the "download." The other person either may allude to, or let us know how they feel. If they are too tired, we have to learn to respect that without taking offence. What can we do if we need to download, or are having a crisis/burning question? We can find another person, with more forks, to receive it. We can look up information, if it can help. Again, we can write, draw, or even script-walk or stim.

Adding to the discussion of detriments to health and well being, autistic people, and others with "fork limitations" (especially women) are liable to stubbornly go into denial regarding their fork limits. We are prone to running ourselves into overdrive. This occurs too often. Much of it is because society is under-evolved, in terms of understanding the autistic, and thus accommodating our differences in needs. In lieu of this, we often end up doing things to "borrow forks" such as; use stimulants such as caffeine or nicotine, and/or simply ignoring our inner feelings and needs. We then "thrust" ourselves into that "adrenalin fuelled" state, in order to socially "perk up." This can, at times, produce "manic" like behaviour (the "melt-up" mentioned previously) and again, can be both hard on the body and the mind/mood balance. It could result in physical crash periods, grumpy-ness, ending up "snapping" at people. It could even result in a mood swing, melt down, or unhealthily prolonged shutdown. What I mean by unhealthy prolonged is; a shut down that is extreme and results in things like excessive internet surfing, gaming, tv watching, self medicating (by oneself) and avoiding the telephone like the plague for days on end. Basically, I mean going through an isolation period. This is ok to do for a day, or two at best... but when it lasts nearly a whole week it can be interfering. Given the above examples, one can see why it's not a good idea to go past your own personal fork limit, and forcedly "borrow forks."

So, now that we autistics, and those with similar needs, can have our very own "spoon theory" which measures our social energy limits; we're given an opportunity to reflect. Many of us are "guilty" of over-doing our own fork limit, or even accidentally (with our lack in theory of mind) not properly determining whether we are expecting too much of others, when they themselves are limited in forks. With this simple "code expression" we can set boundaries for ourselves, with and among each other. This new concept provides an opportunity for us to help ourselves, and our fellows; by examining and discerning all the aspects of what The Fork Theory could entail, with respect to our own individual needs.
Rose Whitson-Guedes
www.agirloutsidethebox.com

Tuesday, April 8, 2014

Logical insights into the differed way autistics "read" people.

As many know, autistics read people in a different way neurotypicals do. This is one of the key pitfalls to misunderstandings between Au and NT. Since Au are a minority, we have taken the brunt and the blame of these misunderstandings. This too, is one of the key causes of trauma, which can often perpetuate in unpleasant ways. We've often been made to feel crazy, for being socially different. We are haplessly criticized, and challenged by this, as well as the difference itsself. However, maybe we are not as "off the wall" as people often seem to think.

There are certain strengths to our way of reading people, if we could hone them in as such, and they could be understood better. One particular aspect that gets brought up is a "sixth sense" and an "ability to see through" people in some way. However, the flip side is that since we are known for misinterpreting social nuances as it is; we're known for a "disability" in being able to read people. We're simply thought of as the one misinterpreting, if we do pick up on something, and react to it. If trauma becomes intertwined with this, then sure; we could in fact be overreacting or even projecting. This happens to many traumatized people, and unfortunately because of our difference in reading people, it's extra rough for the traumatized autistic. This is sometimes brutally so. I can attest to that.

In retrospect, we aren't given enough benefit of the doubt here, either. Perhaps we are picking up on something, which is underlying. It may be so deeply underlying, that the other party isn't even aware. Maybe we're picking up on another persons' deep, inner emotion, something they're holding because of something else thats' affecting them. Or even, something they're holding because of a deep feeling they don't want to share...or even fully acknowledge. Well, we can pick up on those things, yet in the absence of the surface expression. Imagine how unnerving, and even scary that can be at times. If we come from trauma, we may worry and even assume it's to do with something we have done. It may be, or it may not be... but that's not to say it doesn't exist. That's not to say we're not picking up on something. I think we are.

This "gift" can be a real double edged sword. Some call it a "sixth sense." Women in particular have suffered the brunt of this, when that female-wired "nurturer" intuition is going off at the same time as the sixth sense. This is one of the main reasons women on the spectrum can have such profound challenges with emotional regulation. In turn they are often misdiagnosed with mood disorders, and even personality disorders, while the autism itsself gets missed. The consequences of that can be wrenching, and even tragic. I believe many women on the spectrum, gone unrecognized for a variety of key reasons, have fallen to their deaths in one way or another. It's about time society started being more female autism aware, though there's glimmers of hope in recent changes I've seen.

Back to the concept of autistics sensing "energies" and having a "sixth sense"...what is this "sixth sense"? If we apparently have a hard time with general social nuances, then how can we "see through things" and sense underlying subtleties that neurotypicals do not pick up on? In general, we do. It can be explained, but further research would be helpful. People may even think we're crazy if we share what we're picking up on. In addition, we may not fully understand what we're picking up on ourselves. We too need to understand this mechanism and what it means. We know we have a "sixth sense" and so do some of our supporters, but we still don't understand much about it even still. Actually, many people, cynical people in particular, don't believe we have a sixth sense at all... they just think we're blindly paranoid in lieu of "social defectiveness." So again, we feel like we can't talk about it, we can't bring it up...or we'll sound crazy. When we talk about it, we're likely to be diagnosed with some sort of mental illness or PD, or thought of as completely unwell and/or "hard to help." Though there may be some truth in some of that, it's especially perpetuated by the lack of understanding as to what's really going on for us. 

This lack of understanding can cause us to question ourselves, after while. We may even ask ourselves "well am I crazy?? must be!" Our self esteem suffers when we are repeatedly denied of validation for our interpretations. To us, it can feel like emotional and psychological abuse. That's not to say that when trauma interferes with our reactions, we may be cognitively exaggerated in what we pick up, and the exact nature of it. However, it's up to a good counsellor who understands autism at the core, to discern and help such a person objectively. If not, emotional trauma is liable to only perpetuate. Among the current lack of understanding, and in fact ignorance as it relates to the internal mechanisms of autistics adults dealing with trauma; it can be very difficult to recover. I have found that I've had to turn to faith, and my community...since it's so hard to find good help when you're autistic. I'm actually very lucky, because I have more of it than most. This include an advocate who is also autistic. I fought hard to access help, and even when the help that does understand tries to help me...we're all still hindered but un-evolved systemic barriers. This is why I'm hoping to start a recovery group specifically for autistics.

A misunderstanding party, the NT, only perpetuates trauma and hinders recovery, when they make a judgement against one who has been hurt due to judgement....and based on what they do not understand. Again, this only inadvertently continues what feels like emotional and psychological abuse to the autistic with social and interpersonal trauma. The way to abolish these recurrences is to educate people, and hopefully to have research corroborating what we're saying. Also, if more of us speak out and say the same things, reiterating a similar experiences... this is proof in itself. This is why I created a communal blog for us to do this.

So, what is this "half blind sixth sense" thing all about, via logical examination? Well, I think it lies in the profile of discrepancy. If you don't believe in the "aspies have a sixth sense thing" in a more mystic way, then fine. Here's where I stand on the mysticism aspect, just to be clear. I believe there's both a logical and metaphysical explanation for things, somehow interrelating in a way far greater than our understanding. I feel it's to do with algorithms. Aside from what I personally feel, some people find my "I sense energies and auras" stuff a bit flaky, and illogical for them. I too need the logical aspect to things, so I sought to find one. Even the seeing of people's aura colours, which many aspies say they experience (including myself), could be explained by synesthesia. Here is a definition of synesthesia here, I talk about it more in my book; it's quite complex to explain: http://en.wikipedia.org/wiki/Synesthesia 


Here's what I found when examining this topic, based on my own experience and what I know about myself: I can't read faces very well at all, but because of that blindness I have other heightened senses. It's likely the body stance, and tone of voice which I may actually pick up on more...with a heightened, cat-like sense. It's similar to one who is blind having heightened senses in other areas. Combined with barely being able to read the face, this can feel scary and surreal...even like the twighlight zone something (particular if I'm stressed, overloaded, or under slept.) This is particularly true when I'm sensing some sort of tension, or antagonism in varying forms; such as an unwarranted judgement which I know is coming from the fact that I'm being misinterpreted. In addition, I may also have a hard time with certain abstract language, so without being able to be in someone's presence, I may misinterpret, question, or even (embarrassing bu true) simply not quite understand an email/typed message. Obviously, typed messages are lacking in voice tone and body stance; as it lacks in the persons' physical presence.

I don't usually have that issue with other autistics in types messages...we tend to use language in similar contexts. There are still differences between us though, and sometimes this can indeed be a source of conflict between us. We can sometimes say things metaphorically and then take each other literally. I think that's the main thing we run into, if we do happen to run into problems, that is. For me, the issue is more so with NTs. As can be expected, I take things quite literally. If I am already wary of an NT, and I'm bringing my trauma into it (especially if I'm stressed out), I can have a hard time with a typed message from them. I strongly dislike direct conflict, so I try really hard to work through my feelings and my questions. I try to clarify before I assume, I try to explain how I'm interpreting something, and if it's causing me upset; and why.

I'm not always met with support regarding this, but god knows I try, and will keep trying. I am very determined to heal, and grow to learn how to "communicate" with NTs as best as can be expected, without hurting myself of course. The reality is, i'm also just wired differently. What I do hope, in addition, is that NTs realize just how important it is for them to work just as hard as many of us have, in order to understand our ways too. I try to emphasize this in a polite and diplomatic way, most of the time. I'm not perfect, and I can have "slip ups." I've been hurt, and at times continue to be, by those who want to remain closed minded, judgemental, and blinded by this into refusal to understanding me for who I really am. I've even been attacked..and yeah, it hurts. Even through the battlescars, I try not to let them cloud my vision into darkness; I try to be optimistic. I am very determined to press on, and in turn also educate and hopefully and eventually, bridge gaps.

How do we pick up on "deeper things?" Well; people do subtle things when they are annoyed and/or uncomfortable with you for some reason. For example, they may perk their shoulders up, or warble in their voice tone. Although these things are very subtle, I pick up on them. So, "sensing the underlying energy" could mean just the former; my senses are heightened in other areas because I have relatively severe face blindness. Although I can imitate an expression on the face well enough to look like a pretty good tv actor (emphasis on tv, I did not say oscar winning film actor) there is a subtly of "performed and scripted" there. It's so subtle, though, that this is why I believe I often get accused of lying and manipulaitating. People may interpret my behaviour as such, if they're cynical...and if they're not cynical, they may simply interpret it as "interestingly and/or pleasantly unique/idiosyncratic/animated." However, because of the current average level of awareness in society, the last thing that comes to most people's mind is "oh, she must be autistic." Yeah...right! One day, with continuous work, I believe this will change.

I think a lot of women especially are able to imitate enough to pass for "normal but a little teeny bit quirky" based on their heightened cat like senses at picking up other nuances than the face, though some men are too. I have found that for women, faces are the main issue, whereas body language and voice tone is less of a problem. It could be the opposite in men, as my husband has suggested, though I'm not too sure. We're all different. In my husbands' case, he is a little stronger with faces that I am, but I am much stronger with body language and voice tones.

Nobody with autism is able to read a typical facial expression in the way a typical person can, though this varies from autistic to autistic. Some are severely "face blind", and others only a little. Again, I'd love to see more research on this, and how it differs between genders. I have a strong hunch that women may actually struggle more so with the faces, but can be very very sharp on all other nuances, whereas the men are little more even profile; a little better with the faces, but weaker than the women on the all other nuances. This is just in terms of general majority bases statistics, of course. If this is true than I can see why women, and men who exhibit a lot of the "female aspie" or "artsy aspie" like traits, get the brunt of discrimination.

If a person is not able to read a face very well, they'll fall short in terms of being able to adequately imitate the expression. If one's expression looks scripted, and even "calculated" in some way, it is liable to be erroneously judged as insincere... as lying. It's also liable to be misinterpreted in all kinds of ways, included "weird", "manic", "mad", "high on something" etc.. This is because a person with this kind of social-naunce-reading profile will present as something like this; "something is a little strange about that person but their speech is strong, they're articulate, their tone is good"(autism, in the way society currently thinks of it, doesn't come to mind.)

So, really, one can see why those who struggle more so with the face, but are savant in all or most other areas, would be the most severely misinterpreted. It's actually very sad, and cruel if you think of it. I know, because I am one of these people. We'll not go there for now...

Society needs to be educated. More studies should be done, and there are some underway. If anyone comes across any of these studies, please by all means post the links on my page and upcoming groups.

Rudy Simone says "we miss the obvious, but sense what's not obvious" I suppose those subtleties in people's body language and voice tone more so reflect their underlying emotions, than their surface one. So, this could be the more logically based explanation for that "sixth sense." Yes, it is real...and so are we.

Rose Whitson-Guedes
www.agirloutsidethebox.com

Wednesday, March 26, 2014

Unless...


Bless the souls of these disturbed, yet eerily wise, adult like children on the streets. Though I may be unassuming, I vaguely relate to them, in ways not meant for internet blogs. I'm glad I survived what I did, so I could have my heart open to see this for what it really is. What I see is fallen angels, walking on broken glass. What I see is a product of an unruly socioeconomic system, gone haywire and causing global mental, physical, spiritual illness rampant within not only political systems, but familial systems. The ones most vulnerable are people like this, beginning as kids who don't "fit" with the system. This is even more rampant, in countries that have suffered more blatant political corruption. It isn't just rudimentarily depicted people starving in bamboo huts. It's so much more, which the world is too sheltered (by each persons' own will) to look at. Too afraid to look at. The only way to stop it is to follow the advice of the Lorax, and say "Unless"...
Unless we are fearless, willing, and able to see truth, this kind of thing will only continue to happen. We can't save all, do all, it's just impossible...but it starts with saying Unless. If enough people wake up, the world will eventually be awoken. These kids believe in God. They're not religious per se, but believe in God as an Entity. I find that interestingly astonishing, in words I cannot quite find.

Sunday, March 9, 2014

Psychiatry's failure to fully acknowledge the affects of trauma and abuse

I would like to further elaborate on the blog I did regarding the mistreatment of autistic people in psychiatry. http://outsidetheboxgirl.blogspot.ca/2014/02/psychiatric-abuse-of-autistic-people.html
These structurally violent antics extend to many people who are dealing with individual and varying mental health issues.

It occurs to me that not only are psych clinicians profoundly unaware of autism spectrum condition; they're also just as painfully unaware of trauma and abuse affects. They often seem to barely take trauma, and whether a person is an abuse survivor, into consideration at all, before they conclude a persons' "pathology." This isn't always true, and sometimes people do have a decent or good experience. However, psychiatry's failure to acknowledge the causative behaviours of trauma and abuse is happening too often; with negative, even tragic results.

Psych clinicians often fail to look deeper into whether a person is reacting due to PTSD, as opposed to merely a PD, or chemical illness. There's a big difference, though true that it's subtle and hard to separate sometimes. However, for safety, and if there is a true intent to help (maybe there isn't?) the antennae for this kind of thing must be working! For example, those antennae need to screen carefully, with good intuition and observation, as well as background history that's taken enough time needed to be gathered.

The assesor should raise crucial questions, ultimately rooted in whether a person really and truly is borderline, histrionic, rapid cycle mood disorder and so forth. It may be that the patient has simply been, or is even presently being, emotionally and/or interpersonally traumatized in a way that would cause their brain to be stuck in this experience. This is where I feel we need more compassion, and less judgement. Do the damaging affects of those particular bad experiences produce behaviour that could appear to look like diagnostic criteria of certain "disorders"? Has the person actually developed the disorder itsself, due to repeated trauma and abuse exposures? If the latter is true, some sort of physiological treatment could be needed (meds, herbal, self care like sleep cycle/health management) but also, cognitive therapy and good counselling would be needed in conjunction.

A person stuck in trauma, and hurting in it, is not likely to "get better" post being slapped with a judgemental label, particularly when it pertains to a "personality disorder." The label is slapped on the patient, followed by having either having medication thrown at them, or even worse (like in the case of  Borderline Personality Disorder, which is the most grossly over diagnosed PD) a stigma that produces harsh judgement in those dealing with the patient. This is truly the last thing a traumatized person needs. A personality disorder diagnosis is especially very serious. Those kinds of labels should be more carefully drawn up, with questions like "does this person have a consistent pattern of intentionally hurting/abusing others yet has no remorse for it?"There's a common attitude by some that is rooted in "well, a disordered personality is a write off...they'll always be difficult." This is only true in bona fide and severe cases, so in lieu of this, causative behaviours should be given a chance to be understood and rehabilitated. Harsh labelling often thwarts this from happening.

There is a difference between true lack of remorse, and a person not having insight (though potential willingness to gain insight) into the fact that other people are affected by their behaviour. A person asking for help is not the former; they are someone who is stuck in trauma, and reliving their painful experience, and/or experiencing trauma presently. In this state, they may lack full awareness into just how much their concerned friends and loved ones, and themselves too, are affected by their behaviour. Cognitive distortions, due to bad experience and/or chemical imbalance, do not necessarily equal personality disorder. A traumatized person with cognitive distortions such as making assumptions a person is rejecting them and such, will respond to, and improve with cognitive therapy and good counselling. A person with a true PD probably won't, or if so, only to a very limited extent.

When the affected person is given the chance to get better, and gain insight no matter how painful, they will often be flooded by feelings, many of remorse and guilt, that if not managed as well can "take them back out" into sickness. That's just how fragile a person in this position is. This is why shaming and crude labelling doesn't work. It's pretty well dangerous to just slap a pathology on such a person, especially when failing to explain the meaning and the why, and potentially recording this in the written assessment as well. The label itsself is damaging even with the explanation. This is why I think psych clinicians should at least do what my diagnosing neuro psych did , which was; not diagnose the actual PD, but say "features of", and then explain why.

In all kinds of cases, stigmatizing "mental disorders" are over-diagnosed to the point of repulsion. I am itching to do stats via surveys. I wonder if anyone is interested in gathering some of this information for me (email me if so.) Although I have my hands full right now, I would love to do this one day, though I can't just now. I believe it's much more common for a psych patient, often labelled so harshly, to not be inherently disordered in ways so crudely suggested. I believe most of these people are genuinely good hearted, and likely highly sensitive people, who are hurting deeply. They are simply reacting. They be, or have develop through repeated exposure to internal stress, chemically imbalanced. Such a manifestation requires a biological (health and improved self care, abolishment of addictions if necessary) as well as psychological approach to management and potential recovery. Clinicians are way too often carelessly and callously labelling affected people with possessing an inherently defective personality. These actions are structurally violent in the way of being dangerously harmful to the self esteem, and again; the very last thing a wounded person needs. There is an excellent and succinct article on the trouble with diagnosing PDs, here: http://voices.yahoo.com/over-borderline-trouble-diagnosing-personality-11168948.html

It is a seriously detrimental thing to say to someone, who has already been so hurt, that they are missing  key components of their core personality makeup; such as empathy and the inherent understanding of healthy interpersonal boundaries. Maybe some of this is true in a certain context, but for what reason; because those particular answers are what will produce genuine help for the affected person. Furthermore, a person may have an underlying condition that comes with a social difference, such as autism spectrum and nonverbal learning disorder. This may affect aspects of their social understanding. As I've described before in other blogs, clinicians are not astute when it comes to this issue. Assessors are all too often detrimentally short sighted. Without developed skill sets based on up to date precedents, most psychiatrists remain horribly unskilled at identifying insidiously underlying neurological differences that could cause a person to have inherent and circumstantial social difficulty, at no fault of their own.

An affect like this is come by honestly, and should never be attributed to a core personality disorder, yet it happens all the time. A person with a neurological difference and subsequent circumstantial challenge may not inherently understand certain social nuances, but it's for a different reason than pathology, and they can learn. They must be given the opportunity to be taught and to learn. If awareness is gained, presented and explained gently and rationally; the affected person will likely be willing to work with it. The same goes for cognitive behavioural therapy, for any kind of neurological affect, whether it be from trauma or social difference that causes circumstantial challenges.

A true blue personality disorder occurs in people who repeatedly abuse others, refuse to acknowledge it, and refuse to seek help. In retrospect it is true that some people are so damaged that their personality really does become disordered, and they themselves become abusers. Often the sign of that is when family members of that person, particularly siblings drawing upon childhood, claim that the person was in fact abused; yet that person refuses to acknowledge it. Sometimes too, although more rarely, people are just born with sociopathic tendencies. This person will often abuse those closest to them, but also others more subtly. They will often abuse their own children, spouses and close family members. This draws upon another important thing to note.

When a person is younger especially, or more vulnerable due to varying factors, psychiatrists should take the time to look deeper into causative behaviours. They should ask important questions. They often do not take enough time to properly discern what involves the acute safety of their patient; is this patient actually experiencing currently ongoing psychological abuse, at the hands of somebody who is in fact personality disordered? is the patient actually personality disordered, or just impressionable, vulnerable and influenced by a PD? Rather than being personality disordered themselves, is the patient merely an abuse victim, influenced by and therefore being abused by someone with a PD whom they are involved in a close relationship with.

This affect happens a lot when it comes to the children of borderline and narcissistic parents. The worst version of this is called "The Emotional Terrorist" described by author and speaker Erin Pizzey.
Her article is fascinating, uncanny and brings forth the taboo topic of domestic violence enacted by females. http://www.ejfi.org/DV/dv-10.htm I myself am an adult survivor of emotional terrorism, which with my autism, I was especially vulnerable to. I can strongly relate to a young girl in the book and movie called White Oleander. Unfortunately, I went under the radar and was subsequently failed by psychiatric services. This kind of abuse is very insidious, and often framed onto the one actually being abused. Sadly, the child, teen or young adult being abused, will be the one slapped with the PD label; when they are actually an abuse victim needing to be identified!

This is so tragically erroneous, because a telltale sign that foolishly tends to be overlooked is the fact that here we have a young person (the patient) presenting in distress, and asking for help. The distressed person crying "help me" may be lost in their awareness of knowing exactly why they are affected, and genuinely be deluded in thinking it's about other things. This is why it's up to a good psych clinician to look deeper, if help is to be delivered. In fact, it's crucial, or that person will fall through the cracks...perhaps to their deaths. This is especially true when drugs and alcohol become involved.
The clinician should gather information, and really examine the situation. The patient may very well not be aware that they are being psychologically abused, if it's in the midst of happening to them especially. I think there is too much allowance for psychological abuse. There is too much red tape that prevents clinicians from being at least able to point out their observations to the patient, in assessments, and to those who are genuinely concerned about the patient (not the abuser.)

For example, in my own psych reports clinicians noted what my actions, reactions and behaviours were, how I described being stressed out by other people and my circumstance, and how I (as quoted) "just wanted help." They literally quoted me on the latter, in a way in which suggested they had no idea what it meant. I find this baffling. They then proceeded to slap me with a BPD label. Not once did they even consider the possibility that  I was being abused, and was affected by it. Not once! Not once did they observe my patterns of social challenge as something that should have been red flagged, as a possibility that I'm on the autism spectrum. Furthermore, it could have then been identified that this would cause me to be a young woman at increased risk of being abused and manipulated. Rather than this, they did the opposite, attributing my behaviour to simple misbehaviour merely related to being a "borderline." It's no different than an autistic child melting down in a grocery store, and onlookers judging it as merely intentional "bad behaviour."The truth is, for this reason; many aspie females with social and interpersonal traumas are tragically mistaken for borderline. They may present with many of the features, yet those features are caused by different underlying mechanisms than what is assumed.

I didn't meet a standard stereotypical presentation of Asperger Syndrome, as I'd been going undiagnosed my whole life and had learned to cope and mask. In addition, females present differently, and tend to mask the "stereotypical" traits that are currently looked for. Even in lieu of that, there were still obvious signs that were overlooked repeatedly in my case, an important one being that I had a problem with "adjustment." They even noted it, and diagnosed me with "adjustment disorder", which is really just part in parcel with autism. In addition, they completely neglected to identify obvious patterns that were more than just coincidental. For example, major triggers were often due to social confusion and misinterpretation with friends and at jobs, as well as psychological abuse in certain relationships; which again I was vulnerable to, due to my neurological difference.

When I blog about this, it's straight from the horses' mouth. Psychiatry has failed me terribly. I'm lucky to still be here considering how many times I was thrown back out into an ocean of blatant danger, for in which is was to "sink or swim." Furthermore, just when you think psychiatry had had it's fill of hurting me, it happened to me again last year. It happened to me because I spoke out about my experience and gave my "opinions" in the way of a naive, inadvertent "desperado." I suppose I still do so, but there's no turning back now whence the backlash has already happened. This a whole other issue in which I'm having to presently deal with in order to straighten out. As if I have the energy to undo the damage caused by ignorance, in the face of psychiatry's refusal to gain awareness, to learn and update their outdated information. However, I don't really have a choice at this time.

Back to true and more at-the-core personality disorders, I believe they're disproportionately uncommon compared to the over-diagnosis of them due to pseudo appearance whence lack of objectivity in the assessment. As for true personality disorder, it's likely to happen with severe disassociation, when a person disassociates from traumatic memories and denies their very existence. Often this happens when the trauma occurred during the "years before five." This kind of person may be so disconnected with what happened to them, that other parts of their personality crucial for things like empathy and healthy interpersonal behaviour, become either severely blocked or totally severed. In retrospect, just because someone is "blocked" about what happened to them doesn't mean they'll develop, or are currently, a full blown PD. There's all kinds of other things they'll likely develop instead, relating more to chemical mental illness and persistent neurosis, anxiety, panic and phobia. I think the true blue PDs' may have been mistreated, but also have a genuine predisposition to PD, due to lack of empathy. It's the difference between a benevolent sociopath lacking in empathy naturally, and one of the former with abuse added. This would create the violence seen in a psychopath.

It's hard to tell who truly lacks empathy and who is blocking it due to the opposite problem of having too much empathy. This is how people with Asperger Syndrome can get misunderstood. This is not just confined to people with AS either, some people simply deal with their overwhelming feelings by shutting out and/or shutting down. It may be hard to tell with just logical methods alone, which is why I think we should give more value to intuition. A psych clinician with good intuition, and strong skills to objectively evaluate, would be ideal in order to discern in complex cases. Of course, when we say complex, this could be every case. The fact that people are individuals, rather merely representative of "cookie cutter" categories from textbooks, automatically complex-ifies every psychiatric assessment. In lieu of this, we could conclude that psych clinicians simply need more extensive and up to date training on objective and fluid concepts.

True PD with partial or full psychopathy can especially be seen in jails. Sometimes a criminal offender develops true remorse behind bars, whence parts of them previously blocked may begin to un-block. Even still, it's likely such a person would genuinely qualify for things like borderline, antisocial and narcissistic PD, particularly at the time of their crimes. It tends to take something like solitary confinement, basically jail, for a person like that to "come to" at all, and if ever. Again but more unusually, some people are just born without certain components missing there; and this truly does produce narcissistic and sociopathic personalities. An institution such as a jail might be the only place more appropriate to have assessors so focussed on PD. This is where the place of applying PDs is actually appropriate. Sometimes there even seems to be more opportunity for those in jail, to rehabilitate, than the general population. Even in the face of being diagnosed with PDs, it's often assessed as to why.

When a psychiatrist with this approach to cases is employed in a place where help is the intention, and a person has not even committed any kind of crime, the results can be disastrous in a way that just seems backwards. This happened to me (during my struggles with alcohol and prescription pain medication) and others too.  It was at the hands of a highly cynical psychiatrist inappropriately placed somewhere intended to help people with mental health and addiction issues. This goes to show the societal discrimination, and incrimination, towards people struggling with addiction. Often, people struggling with self-medicating are dealing with underlying mental health challenges, especially trauma, as well as potential neurological challenges that have gone unrecognized. The last thing they need is to be treated like criminals, when they are voluntarily trying to seek the right help in order to stop medicating.

Psychiatry has gone overboard on diagnosing and "pathologizing" affected people, as if the true occurrences of these things are far more common than they actually are. They don't even take note of something that I think is very obvious: a person who truly is personality disordered is highly unlikely to seek help, let alone think they need it. I suppose this isn't always the case with addictions, but it depends on whether the person is there voluntarily and preventatively, or involuntarily and due to being out of control on their drug of choice.

A truly personality disordered person will refuse to see what they are "doing wrong." In retrospect, one who is affected and simply reacting may be, at least partially, willing to look at their behaviour by way of asking for help to change it. I think it's important to note that people who seek help know, at least to some degree, that they need help. A true blue borderline or narcissistic personality type is unlikely willing to undergo a clinical assessment, unless forced. So why "throw the book" at people who are asking for help, with all this quick-to-judge labelling? How does this empower people to feel better about themselves, and to forgive themselves? This is something every PTSD and abuse survivor desperately needs.  So in this I ask what's the point, aside from psych assessments done involuntarily (say in places like jails), in throwing around personality disorder pathologies?

It's different when we're dealing with chemical illness for a persons' safety and well being, such as identifying actual severe bipolar disorder, severe anxiety/panick and major depression. Even in these cases, those illnesses are over diagnosed. Trauma survival can be mistaken for them too, since it may cause the pseudo appearance and affects similar to various mental illnesses. It depends on the severity, and there could be both trauma and chemical illness co-occurring. Their needs to be more discernment about whether trauma is a key cause and an important factor. If so, medications, at least alone, will never fix the problem and provide complete recovery. Medications are not, and never will be, a "magic" solution that can simply fix a wounded heart and soul.

There's a crisis involving how saving money is selling many affected people short of being able to truly recover from their mental afflictions. Assessors do not, and in fact often cannot, take enough time focus on the individual case. They're sometimes almost recklessly using textbook boxes to "stick" people into, and are quick to prescribe psych medications without nearly enough caution. All these things save time, whence money...and it also has some people ending up dead. Not only are many people sold short, but they and their loved ones are harmed in the process. Again, there is too much structural violence going on in psychiatry especially, and even other "helping" professions. There is too much prioritization for profit, and saving money, under the guise of "experts know best."

This is so much so that people who have been traumatized, or may be wired differently in a way precedents are poorly representing, feel they have "nowhere to turn" for real help. People often get so badly burned and let down by the "helping" systems that they turn to further self harm. Again, they sometimes even lose their lives. The lack of awareness and fluidity psychiatry has, regarding all these overlapping and crucial issues, is flat out dangerous. It's completely socially unjust and again; structurally violent. Many deaths are caused every year, from failure to effectively help a person who is simply asking for help.

When I asked for notes written about me, through the Freedom of Information act, I had the opportunity  to actually read marks on my file. Again, they say unbelievably callously worded things such as "she claims she just 'want help.'" Yeah, that's correct; I wanted help. How perverse can they be, when they have to somehow twist that around into my having some sort of attention seeking behaviour, because I was crying out, in a fairly impaired state "I just want help!" How cynical and negative could they get, looking at a person presenting in crisis, in this kind of light. Yet it happens often... and it's unreal to me. I'm sure I'll never be able to understand it, because I don't think subjectively. I think objectively and I am able to intuitively feel it when a persons' truly in pain. So, I don't get how their over-technical precedents could cause them to miss such things, but of course that's because I don't have any idea what it's like to be that way. To not be able to see outside the box and examine each situation as a unique, individual case with varying factors. To not be able see the textbook as nothing more than a mere general guideline.

Yes it's true, some people actually do fake things for attention, and truly are somewhere on sociopathic turf. I suppose they have ruined it for everyone else who isn't... but usually, people who actually ask for help genuinely do need it. There's nothing more to it than that. When will these systems reform themselves to a level where they can regain the trust of the people. When will people be able to finally feel that when they need help; there really can be somewhere good to turn. In the mean time, we affected have almost only each other. It would be nice if the system could actually be supportive and implement help methods that are truly helpful. The rainbow from the rain will truly come if and when this icy, callously obligatory "hands off, but on the watch, textbook, pen and prescription script" kind of approach can be abolished. In it's place, there could be real, compassionate, and empowering multi-team, multi-approach help for all. I like to call that Real Help, and that is my dream. I will not give up on speaking out, and being a voice for this change.

Please join me if you wish. I have a communal blog called It's Not Okay, where one can send their own personal experience stories to the contact in the description. www.itisnotokaywithus.blogspot.ca

Rose Whitson-Guedes Au
www.agirloutsidethebox.com

Monday, March 3, 2014

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
my feelings were dismissed as sham
you shouted "how dare you ask
for a sandwich
how dare you be hungry
and have needs
to be fed"
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
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
and to burn in the pan
then when I go from the pan
from the frying pan, to the fire
it feels so incredibly dire
whence the background going unsaid
is of a million tears, that were shed
and now 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
while continuing to hoard
whence the deepest pain was stored
and it has to be done away with
I can no longer live, with a myth
of unconditional love
when I know better
so I call upon 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
needs to be filled
so I can stand up
for me

Rose Whitson-Guedes Au
www.agirloutsidethebox.com

Sunday, March 2, 2014

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


I am an autistic savant, 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 is often seen, by cynical people of power especially, in a perverted light. If not, it's even just a fearful light, where conventional people might have some sympathy but think "oh my goodness, what she's doing will make it worse!" However, I feel we should be afraid to speak out. What kind of society is this? A totalitarian one? Where's the sense of freedom and free speech that may provoke change via solidarity? I've had supporters, which say what I'm doing helps them; and this keeps me going. However, I've also had attackers...and some in particular have been very vicious. One in particular, has basically tried to blacklist me from access to medical care. It is reminiscent of a gay person coming out of the closet some 30 years ago, but even more messed up in some ways...


I am a loving mother, and an autistic savant woman. So I've opened up, I "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"... two words: 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....


-Rose Whitson-Guedes Au
www.agirloutsidethebox.com

Parents, Fight Back

Unfortunately, mistreatment happens to most autistic adults today. However, there's hope to prevent it; starting with the parents fighting back, and saying No to the systems that fail to protect us from misunderstanding that results in trauma.

I really hope that opening up to autistic kids' parents won't be offensive and cause any problems. I only want to share with them what can happen to us if we don't do something now. I am an autistic woman and I also have an 8 year old autistic son. I am currently being persecuted and even written down I am "munchausen" because I know my son is afflicted, as autistics are in the environment of today. I therefore choose to give my son holy basil herbal tea for calm, l-theanine, and choose to feed him a gluten and dairy free diet. This was written by one cruel person with a lot of clout, after seeing me and knowing me for less than an hour. I'm now in am adversarial battle to get it removed from public information, as if with fibromyalgia/EDS/chronic pain I have the energy. On top of that, my health is being affected too. I'm not getting the care I need...because it says I'm this way with myself!

I "claim" these things work for him, and for I, better than drugs; which is my human right and choice as a mother and as a human being...and this makes me "munchausen." I cannot even open my mouth to express any concerns for myself, or my children, without being seen in this light at this time. This isn't okay for my kids more than anything, so I fight back.

know persecution. It's because of my own autism and how I present, that i've been seen like this by the cynical, ignorant and un-evolved "professionals"...whom are "professional" enough to do a lot of damage if they feel so inclined. Well, they have and they are continuing to. I'm seen and framed in a light which is simply not the truth, and I wonder what it'll take to prove that. How sick must I get; but even if I get sick, what are they gonna think...I'm going it to myself? It is so unsafe and yeah, I'm terrified right now. I have no choice but to defend my truth or risk danger. It hurts more than anything to be accused of this. Words cannot even describe it...

Autistic or not we have to stand up against this kind of thing. I'm not the only one this happens to, though my case is a more severe example. It's our choice how we choose to optimize the functionality of our kids, and ourselves for that matter...so we can function as parents. If we don't, what has happened to Ty and many others, even me in the past, can happen to our kids. Gosh omighty I don't understand what the crime is?

Therapies are less the effective and/or extorted in price. Greed and dollar signs have encompassed the world of autism therapies. It's not fair to any of us. Then, when we try to help ourselves, we can get attacked. When we don't adhere to what they say is the right way, we are persecuted...via nearly prosecuted! It's they who need to be prosecuted if you ask me, and frankly, I'm seriously looking into that. Because it's arbitrarily abusive, and structurally violent, to even as much as passive aggressively dictate that only a certain way is the right way. To deny all the rest albeit proof in action. This seems rather totalitarian to me. Bordering on fascist, but in whispers. This is what modern society has become, and it's gone to far...and thank god for the internet. It's so important to be able to share stories amongst each other, and find answers suppressed and unsaid.

Let's hope the more we speak out, the more society will evolve. That is why we must. If anyone wishes to share their own experience on this communal blog, please feel free. you may always remain anonymous if preferred.

Rose Whitson-Guedes Au
www.agirloutsidethebox.com