I am returning... and I intend to stay this time :)

However, I have learned that no matter how long I am gone from Twitter/the Internet/etc. there will always be something to write about when I return. lol

As my readers should know, I cringe anytime I hear the word "Autism" paired with anything ridiculously grandiose with a negative connotation [i.e. "Crisis"].

@BarackObama Address the current Autism Crisis! In light of the autism hearings, the time has come for answers! http://t.co/rN4MaXwv
— TannersDad Tim (@TannersDad) December 11, 2012

I do not wish to pick on @TannersDad as I both appreciate the other side of a debate and enjoy reading a different view.  I will admit that these words often frustrate me [as do many many more unrelated and mundane things - this is the nature of autism; low frustration tolerance] but I feel it is important to remember that there are different opinions expressed by people who are just as human as I am.  Also, if one assumes that their position is 100% right and everyone else is 100% wrong they show no grasp on the reality that truth is colored by perception, experience, and state of mind.*

Brace yourself; this is going to be a bumpy ride.

I digress, a little too late, but I do.  Actually, I am placing this part after the jump and continuing above, so unless you a psychic or you read after the jump, you have no idea I strayed so far off topic.  For you, thorough reader, I insert the following:

COMMUNICATION

No matter what, it always hurts...

You spend your life being alienated away from your family... always told that nothing you do is good enough, how you are the problem, how you makeup stuff and the fact that the family relationship is broken is all your fault so fix it...

How can my mother alienate me from my father's side of the family?  Why does no one stand up for me and everybody judge me based on the shit other people say?

I really do not need this right now.  I have been studying and working hard to get accepted into this program and I am trying to manage steps forward in my career and life paths while filing a lawsuit against my workplace because it is my only option but I also have to deal with the fact that I have no family support.  I am judged constantly and no one cares about how I feel or what has happened to me.

I feel like everybody always expected something else from me... always wanted me to be something else and could never see who I was.  I look into the autistic community and most of what you see is parents/family/others who want something else for their autistic children and are unable to appreciate what they have.  I realize that not all autistics are like me - I realize that some are unable to express themselves verbally or cope with the stimuli that must be faced in even the smoothest of days; but I also know that I cannot always do those things.  I have days where I would rather just not talk because whatever I say always makes it worse; when I know I cannot safely cope with driving but do not always have the option to avoid it; there are days that I do not want to do anything and there are days where I want to scratch the skin off my body and rip the hair out of my head and beat myself against the wall because the physical pain would be some mixture of what I deserve and how I know I am still alive.

I wish I did not empathize.  I wish I did not worry about how people saw me or how they felt or what would make them happy or help them. 

I know that the thing that happened probably was nothing, but I cannot help but see one little thing and freak out.  I am trying to get ahead, I am trying to move on, I am trying to pursue something I may be better at; but I feel that the people who should support me are just ignoring me.  The "community support" that people rely on for furtherance of careers and projects and themselves is severely lacking.

I am shouting down a hall void of life, air, warmth, matter.
I speak coherently but it surely must be a different language.

I feel like I exist in this world but I am not a part of it.  I am trapped to watch but never understand.  I will leave no lasting impression other than being the weird person who never fit in, could do no right, or only proffered lies and tricks.  The people who harassed, bullied, threatened, belittled, and dehumanized me will move ahead, be supported, promoted, and successful because that is how the world works.

I will never be recognized for what I am, what I do, what I am capable of; I will always be deficient, lacking, broken, sub-standard.  The outside will always want to change who I am, I will never be good enough.  I envy the ones who do not understand this fact.  I envy the ones whose ignorance signifies a small amount of bliss.  I envy those whose mental capabilities are lower as their intelligence will never intimidate and they may have the peace that comes with being oblivious to the workings of the world around them or their standing in the eyes of others.

In actuality, my pain changes nothing as no one listens.  Everyone wants a name for the scary monster under the bed.  Everyone wants a word to blame, something that can be targeted, aimed at, eventually destroyed.  It does not ever matter if the thought process is illogical or wrong or if they are missing something beautiful and unique.  It is the reason our super heroes become villains, why we hate, dismiss, discriminate against that which we do not understand.

It is why even the seemingly simple idea of equality founded our nation but also divides it repeatedly over the decades.

I need a hot chocolate, my pj's, and my rabbit.  Followed by a week of sleep, stimming, and being able to throw out the bird randomly when I have to relive all the shitty event which have lead to my biggeldy-pucked existence.

Retrospect on a Hiatus

So I have been away from social media for the past few weeks dealing with court and other personal matters.  I have been searching information on discrimination law suits and reading about outcomes and other fact-based information.  I have also been reading through the comments sections that are always found at the bottom of internet articles.

The internet is a wonderful place to share ideas, talk about what bothers us, and vent our frustrations.  The internet is also a dark place filled with ignorant ideas and snippets that may look good or sound snazzy but which one would not dare to let fall from their lips around their "In Real Life" acquaintances.  Or possibly a platform for us to listen to the outbursts from individuals who cause their own family and friends to shake their heads and offer apologetic looks when those outbursts have been expressed in their company.

I know that there are people out there who are greedy, misguided, ignorant, or looking for an "easy way out" and decide that claiming a disability and attempting a lawsuit is appropriate for them when their situation clearly dictates otherwise.  I know that this causes unfavorable opinions upon anybody who claims a disability and files a complaint or lawsuit.  I know that people say very ignorant things on the internet because that is why the internet exists.  While I am reading those ignorant things, my anger is usually placed on the people who attempt to scam the system.  My fear that this process will be fruitless has grown steadily larger and I wonder what I will do if my claims are not taken seriously.  My goal is not to receive a large sum of money, but to be able to go back to work, be successful in my career field, and not exist in a hostile and demeaning environment.

At the same time I wonder how I would ever be able to go back now, after years of being made the fool and earning the contempt of my coworkers.  Years of having managers who talk about me negatively with other employees, punish the employees who associate with me, and get other employees to lie about their experiences.  I look at how many of these cases are lost or deemed 'frivolous' and wonder how many of them have been fighting a stacked deck?  When you can take and employee who has previously messed up and given them a chance to redeem themselves by lying under oath or when you just do not have enough proof...  It is not as though any of the individuals who threaten or harass you are going to admit to it and whose word gets heeded?

Then at the end of the day you have the average tax payer who sees these law suits as a cost they ultimately pay and the payout as their hard-earned money.  I am not so naive that I do not understand that a business's expenses are paid by its consumers nor do I believe that legal fees and settlement money grow on trees.

I think the most frustrating part of this whole ordeal is that I do not want to sue, I do not want to go to court, I did not, initially, want or need money from my company...  I just wanted a simple, free, easy accommodation which was in line with the privileges afforded to my coworkers.  I wanted my demerits removed from my file and I wanted a good reference if I decided to go to a different firm.  That was never going to happen.  Who would hire an employee who was fired with a number of demerits?  How do I obtain employment on-par with my previous employment or in my career path?  I have monthly bills and an education to pay for... I am a good worker, smart, friendly, and kind.  However, I currently cannot get a job comparable to where I worked.  I have lost wages from that company for suspensions and other unpaid leave.  I have suffered and experienced pain from working there and dealing with the different things I bore while there.

I also have experienced lost wages since I cannot obtain comparable employment.

I get so frustrated because I have seen so many people who struggle under discrimination [or just under managers who are complete douche bags] but do not fight it either because they feel it is better not to [something I do not entirely disagree with] or because they tried and lost and are now even worse off.

It is hard to be where I am, it is hard to be suing an employer, but it is also hard to be that employee who suffers while everyone watches and makes their opinions.  Everyone seems to think that since management is not changing anything or supporting the employee that means that the employee is in the wrong and a problem.  It is easier to turn your back on one uncooperative employee than to try and understand or stand up for an individual who needs assistance.  I understand that there are worthless people who attempt to take advantage of the system, but I also know that there are good people who are kept from getting ahead or succeeding because managers are people too.  People are flawed and make mistakes.

When a company will not follow the law and chooses to degrade one individual till they are gone instead of spending far less time, effort, and money helping that one individual succeed, what in the world is that person supposed to do to put their life back together?

The whole situation is biggeldy-puck and so the answer is probably equally biggeldy-puck.  Does not make it right, but maybe it levels it out just a bit.  If someone is mad because they have to 'foot the bill' the target should not be the individual who is suing, but instead the company/manager who created the situation that resulted in a suit.

Impacts of long-term stress

The human body cannot handle on-going stress well. Long-term, or chronic, stress can shrink part of your brain and make it harder to focus and remember things.  It could also cause, or worsen, other health problems such as depression, anxiety, heart disease, and diabetes.

Autistic children who grow up in homes that cause stress/distress and autistic adults who have to deal with stressful family/work/peer situations often develop anxiety, depression, or physical health symptoms due to this stress.  I realize that I am not a PhD, but I have first-hand experience in this and have also read articles and books that discuss this phenomenon.

Then there are articles like this one that point out how "low-functioning" [in this article, referring to actual abilities to function and not intelligence] autistic children can "bloom" in supportive households [yay!] but that statement then implies that they "wither" in unsupportive households [cry].

"Although autism is known to cause cognitive deficits in some children, it is also associated with certain enhanced intellectual abilities, and some affected children have extremely high IQs...  The researchers found that 63% of the children did not have intellectual disabilities... and even among the severely low-functioning, about 10% may improve dramatically over time, with some growing out of their diagnosis by their teens." [This paragraph has been 'pieced' together but does not alter the context.]

"About one-third of the study group were considered low- to low/medium-functioning in terms of communication and social skills, meaning that they may have trouble talking, interacting with others or socializing and making friends with peers.

"High-functioning kids with autism, meanwhile, can communicate effectively with others, maintain friendships and are willing to engage in social pursuits. While the highest-functioning children tended to show the most improvement over time in the California study, about 10% of those who started out in the low-functioning group also moved into the highest group by age 14.

"...

"Briggs adds that another “very key” factor is that the mothers of the kids who bloomed tended to be more educated ... Early intervention matters because the brain is remarkably vulnerable early in life, built to shape itself to the environment it initially faces. “The young brain is disproportionately receptive to input, whether positive or negative,” says Briggs. “That’s why young children can learn a second language easily and why early exposure to domestic violence and toxic stress are so incredibly damaging.” [emphasis added]"

Please also see this article which discusses the theory that some genes are like orchids - only with proper and meticulous care do they become beautiful.

If you have read ANY of my blog, you know that while I am open to learning more about current thoughts on 'treatment,' I do not endorse the idea that I am sick or need a 'cure.'  that being said, I see a difference in 'cure' and 'support' but the point of this blog entry is regarding stress so please re-read the emphasized quote if you missed that point previously.

Part of the problem is caused when autistics who desire social interaction [or to 'fit in' even if only with a small/select group] yet do not have positive social experiences can develop anxiety.  First-hand, I can assure you that it leads to several feelings.  There are feelings of helplessness, confusion, and hurt.  It is hard to go through life being rejected, mostly due to being misunderstood, and not known how to fix it.  I may not have known when I was a child why, but I did know that I was unable to succeed at social interactions.

Going through life being misunderstood and rejected by family and peers is devastating.  I was lucky that I was able to find a few friends to accept me, qualify for advanced classes, and mature quickly so I could escape.  A big downside is that I did not have much of a childhood.  I was talking with JD and he told me that he was sorry I did not have a childhood.  I asked him what he meant and he just gave me that look that he gets sometimes [usually when he is thinking about our marriage] and said that if I had had a childhood, I would miss being a child.  I could understand exactly what he meant even though I feel no longing to return to my childhood, I do feel that no child ever deserves the experiences I went through.  Nor do any experience the more-severe abuse that some children suffer.

My childhood stress also resulted in frequent migraines.  I was told that my 'headaches' could not possibly be migraines because if they were migraines, the pain would be so severe that I would not be able to function.  Too bad that the autism also affected how I perceived pain but did not alter the nausea or the sensitivity to light or sound.

These stress impacts affect children and then continue to affect the adults they become.  Even an autistic child who does not appear to interact with the people around them do observe their world, do have feelings about their world, and do create thoughts about their world and the people in it.  If their world is stressful, that will impact them and affect how they are able to cope as they grow.  [And if you do not believe me, I can link to a post like this one as often as necessary.]  There are also examples of people/parents [commenters] who mean well but just do not express themselves in a logical [or necessarily helpful] way.  This is not necessarily a flaw as it demonstrates their frustration after struggling so hard for so long.  I am positive that they have had numerous difficulties advocating for their child to get services and I honestly understand their frustration and the fact that they may do or say things in ways that are not effective just because they feel that they have tried everything else [I understand this ALL TOO WELL!].

I am now an adult who has to deal with continued stress from my family and dealt with an enormous amount of stress at my former job.  It is hard to tell which stress was worse; the family stress is on-going, but the job stress was so intense on so many levels for so many years... Some days I am glad that the daily stresses of working there are over even though it has affected my future employability.

What started as a very-specific anxiety which was solely contained to interactions with specific family members has grown into an anxiety which at times is crippling [fear, panic attacks, inability to cope] and without direct cause.  I have also added depression, hostility toward others, and the shattering of my perception that the rules and laws actually protect the people who need it.  But that I will save for a second post.

Stress References below the jump.

Updated Response [with 60% less anger!]

When I wrote this entry, I did not verify that the quote existed.  One of my Twitter Birdies provided me with the link to find that horrible comment [and, of course, I found that there were other comments just as awesome].

This is specifically in response to Sarah though there are other comments on this article which are misguided.  I found this comment on its own [and therefore without context] and I made me very angry.  When I was directed to the location of the quote, I was still angered by what was here but I also wanted to address this audience with more consideration than I exhibited in my personal rant/response.

I think it is important to consider how the words that are placed on sites like this actually make those of us who are autistic feel.  We have to work, play, cope, and exist in this world and the sensational language and responses [especially when they are negative] affect how we are perceived.  I think that sometimes the authors of such comments intend to say something powerful and encouraging but never stopped to consider the words that actually came out.

Let us re-read this one comment:

'Many children, mostly boys, in the US have autism. This has caused "collateral damage" to American children and means that this generation will have a shortage of people [without autism and able to do worthy work?] to do essential jobs that only NT's can accomplish' ... Like being engineers and scientists?

Sorry to inconvenience the rest of you: I was too busy 'giving my life away before the onslaught of autism [that I was too weak to fight] and now the rest of the country will parish' because me, and all my autistic brethren, went and got all diagnosed with an Autism Spectrum Disorder??

:/

Please consider that autism [including the broader spectrum] causes 'side effects' which also include interests in math and science, the ability to see pictures in our heads and evaluate structures, focus and perfectionism, logical problem-solving, and quick mental processing.  These strengths can help us to be wildly successful. [Personally, I can complete complex calculus equations but cannot chose which mustard to buy at the store.]  Please also consider that the DSM criteria for autism is being altered due to a better understanding of autism.

I hope you can read this response and just understand how insulting your comment is to Autistics.  Especially since: "The majority (62%) of children the ADDM Network identified as having ASDs did not have intellectual disability. The largest increases during 2002 to 2008 were among children without intellectual disability (those having IQ scores higher than 70)" as of the 2008 published study.  These studies are based solely on the populations of children who are 8 years old at the time of the study.

A majority of us have IQ in the above-average to superior range.  A majority of us do not consider ourselves sick.  A majority of us find a lack of understanding and acceptance by those who feel pity for us or believe that they need to empathize with our lives.  No, not all of us [including myself] can speak [verbally] in an effective way, but that does not mean that we are less capable of felling or thinking or understanding.  We know what you think of us, especially when we are young and you are the adults in our lives.  And it does affect how we feel about ourselves and how we feel about you.

The Darker Side: Si vis pacem, para bellum

This particular blog post is highly negative and dark.  I express my thoughts on suicide [which include that it is illogical and solves nothing] and describe the horrible boughts of anxiety/panic that I have been experiencing lately.

I begin by talking about my high IQ and excellent memory and how my brain has developed a safety mechanism that protects me from my traumatic past.  However, this mechanism is not enough to spare me from the effects of what I went through for four years at my job.  This is where the negativity comes out to play.  

If you are prone to anxiety or have struggled with suicide, I do not recommend that you read the full entry.  If you still would like to read what is alluded to above, you have to click to read those parts.
 
Obviously I am not giving up and I am not fleeing town.  I started this blog to try and process what was going on with me as well as to learn more about my diagnosis.  An added benefit is that I get something to do that occupies my mind and gives me something else to focus on.  Unfortunately, I had to dwell on these things at the start of last week and then was unable to shake them.

JD has been at my house since Wednesday and I have been off work.  One thing I can say, JD has managed to be very supportive.  One of the issues we had was with his perception of what was going on at my work.  I guess the last two years have gone a long way toward allowing him to understand and accept.  I do not know if we will end up back as husband and wife, but I do know we will be okay as friends.  And that would be enough.



Preface:
A few months ago I read where autistic children who desired the social interaction but did not receive it tended to develop anxiety and/or depression [I believe the article cited both, but I know it cited anxiety].  I can see the truth in that, but I am fortunate that my anxiety stays confined to situations where I am being misunderstood but does not usually affect my daily life.  I am fortunate that I occasionally have a "depressed mood," or a period of mild depression, as opposed to suffering from clinical depression.  I am also fortunate that with my high IQ (130 + based on average of scores) and excellent memory, that my "bad" memories of negative experiences tend to get tagged and filed where they do not often get accessed but also are not forgotten.  It is a protection mechanism that I am grateful for; the negative memories are there [and if I go "looking" for them, I still get to relive them vividly] but I am allowed to maintain my "innocent" and naive personality trait and not hold a grudge.  An unfortunate side to that is since I do not hold a grudge, it took way too much before I was finally able to break ties with my mother, and other assorted family members.  A good counter to this is that, when it came to the shit I have been through at work, I was able to persevere and maintain at work without impulsively quitting [even when I wanted to] or telling anyone to fuck off.
 
In the end, that does not matter.  It does not matter that I have been nothing but open and honest.  It does not matter that I do not have an ulterior motive.  It does not matter that I do not have the motivation to manipulate people.  It does not matter that I can objectively look at a situation without having an emotional response that I need to overcome.  It does not matter as the only things that matter are the perceptions and choices of those who have control.  They perceive an ulterior motive, a manipulating quality, and a false claim of either my diagnosis or the affects of the autism.  An added part of the frustration is the fact that they have just ignored the rules.

I think part of the problem is ignorance regarding the autism spectrum and part of the problem is the motives of management.  At this point, regardless of what has happened, it may appear more beneficial to management to maintain their decisions and hope that I do not file in court [or that if I do, I do not win].

Point:
So the last week I have had a very hard time ignoring the frustration of my situation.  I was fired in May after almost five and a half years of employment.  Four years of that was filled with attempts to gain accommodations after the terms of my employment had been altered.  I have a large "folder" of memories stored up and recently had to start dealing with and sorting through those memories.  The memories are vivid, include feelings that are difficult to process, and create a state of endorphin-spiking, fight-or-flight, fear and anxiety-ridden panic.  I had to go through all these experiences and got to process them as a unit, as opposed to individual happenings.  It was clear to me that management was intent only on maintaining their denials of responsibility, claims of appropriate action, and eventual finding that I was an employee with poor work performance who needed to be fired.  Their decisions, actions, and in-actions alike have made my degree, passion, and desired career path null and void.

Now I am not a suicide candidate as it is illogical and accomplishes nothing but the other day I found myself envying individuals who could "opt-out" and never have to continue in their footsteps.  Aspects of what they have done and the position they have placed me into took away all of my hope.  I desire to have my life go back the way it used to be.  I desire a resolution.  However, I know that this is not possible and any naive hope I had kept alive for years is gone, crushed, taken.  I have reached the point where just thinking about the things that I have been through causes me to experience the following:

• my chest feels like it is being crushed
• my heart pounds 
• my brain feels like it is swelling and will explode if I do not stop the stress
• extreme [and possibly irrational] fear, anxiety, and panic
• the feeling that I will imminently die
• a migraine which continually increases until I can calm down and think about anything else
• an overwhelming sense of dread
• the lack of desire to persevere

These feelings are so terrible, that I wish to no longer experience them ever again.  I know that I cannot avoid these feelings in the future which makes the whole experience worse.  Previously, the response has not been that extreme but now it appears that this is what I have to look forward to anytime it is brought up.  All last week, each day, that is what I experienced.  I am experiencing it now just writing about it and I am not even thinking about the specifics of what happened.

I know I need to continue, to persevere, so that what happened to me is not done to others.  Knowing that does not change the fact that I want to leave.  Just go and never look back.  New state, new city, new life; just leave everything behind.  Never look back.

Ballad of the Broken Toe

I had to take Rocky to the vet as he broke a toe.  The vet said that he did a good job at breaking his toe because it was broken pointing up [instead of down].  If it had been down, it would have bothered him to get around as he would have stepped on it every time he moved [and it was a toe on a rear foot].  Normally they 'buddy tape' the broken toe but Rocky did not need this either.  He did manage to tear one of the two ligaments and the vet thinks the broken joint [the first joint where the nail grows from] may fall off.  If it does, it will not affect him [other than he will have one less nail to clip].  This is the joint that is removed when a cat is de-clawed.

Created by a friend a friend at Spectrumville as a dedication to Rocky because of his broken toe.  Song credits to Dré Labre and his original video.  Absolutely hilarious to watch these rabbits sing!! Enjoy!

Corrections/Updates

All changes/updates made will remain here on the Corrections post for at least a week.  After that time, the original blog entry will be updated to incorporate the changes or edited and linked to a second post depending on the nature of the correction/update.

First, I want to add a link to my post on Paul Corby.

I feel that this article does a good job of expanding on the rejection and corroborates the interpretation of the rejection and motives which were made by the other articles and myself.

Secondly, I have corrections to make to my first research post.  Next to this photo, I wrote the following:
"I would like to take this opportunity to field a few disagreements I had with a presenter regarding this exact thing...

She put a chart on the wall which showed diagnoses of ASD's.  It was reflecting individuals up to the age of 21 who were diagnosed and how the incidence of ASD's was increasing.

The information was labelled by year, the year that the person was diagnosed.  I pointed out at least 2 problems with her data-set, just upon a cursory glance:
1a) As the data wasn't standardized by the child's age (ie. anyone who was diagnosed, they were counted in the year they were X years of age... if X=9, then a person diagnosed in 2001 at age 8 would be counted in 2002 and a person diagnosed in 2001 at 20 would be counted in 1990) so the numbers could be skewed/altered by diagnostic experience - especially as "Asperger's Syndrome" didn't make it into the DSM until DSM-IV in 1994 (the text-revision was published in 2000) ... you'll notice that automatically means the Aspie I identified in my example would have been 13 and unlikely to have been diagnosed."

While it is true that I attended a presentation where a information was presented which did not correlate the data by age, I need to note that the CDC information is based solely on populations of children who were eight years of age as of each year of study.  Therefore, the data presented in this graph is not skewed by ages of diagnoses.

I would also like to add the following:
The 2012 ADDM Community Report was based on the data obtained during the 2008 study.  In the opening they noted that the "estimated prevalence of ASDs increased 23% during 2006 to 2008 and 78% during 2002 to 2008... We know that some of the increase is probably due to the way children are identified and served in local communities..."  One of their key findings was that "The majority (62%) of children the ADDM Network identified as having ASDs did not have intellectual disability. The largest increases during 2002 to 2008 were among children without intellectual disability (those having IQ scores higher than 70), although there were increases in the identified prevalence of ASDs at all levels of intellectual ability."

Although the DSM-IV-TR lists ASD's under Pervasive Developmental Disorders, only three of those diagnoses [Autistic Disorder, Aspgerger's, and PDD-NOS] are considered ASD's while the other two [Rett's Syndrom and Childhood Disintegration Disorder] are considered Pervasive Developmental Disorders.  [Citations for this include the above-refernced Community Report which lists the three ASD's and MMWR Vol.55 (17) pg 481 which specifies how all five PDD's are classified.]

I have been looking closer at the originating data [the MMWR articles as opposed to the extrapolated ADDM presentations] and other CDC publications/resources in order to prepare additional information to go along with the above.  Right now I will note that the DSM-V Proposal separates ASD from comorbin conditions which will give clearer information.  Unfortunately it probably will not be until 2016 when we get the ADDM data from 2012 and then another two-to-three years after that before we start seeing the data under the newer classification.

That is all I have for you right now.  I am currently working on two "science-y" posts [one dealing with prevalence and other useful trends/information and one dealing with filicide which will be very cheery], an Americans with Disabilities Act post, and a an assortment of personal-experience posts.  The next post will likely be a personal post, then the ADA post, then likely the ASD prevalence/info post.  Anyway, that is the two-week "forecast" for Just Plucky! and I hope you stay tuned.

Paul Corby. Denied heart transplant.

This blog entry is a result of my reading about the decision made by Penn Medicine regarding Paul Corby. By the way, go sign the petition should you read the information from those links, other news sources, and/or the contents of this blog. [Which was written thanks to a blog by a friend which was the catalyst I needed to write this coherently.  You can find more about that post below the jump.]

When it came to the heart transplant of [specifically] Paul Corby he did deserve equal consideration.
Other than the heart defect, there was nothing apparent [or expressed] about his physical health that would make him ineligible. Yes, he is an adult with different issues [autism and both possibly-related/co-morbid mood disorder and possibly-related unknown medical reactions; exhibited inability to manage his own medications; and possible reactions between current and necessary medications [ie: imbalance between medications, not necessarily life-threatening].

What I see as the main arguments that are important to consider in regards to otherwise healthy individuals in similar situations:

1. Autism should not be viewed as a life-threatening "disease" that affects whether one can be on a transplant list.
2. Even though Paul is an adult and it would be unlikely that Paul could manage his medication, Paul is currently under care and would likely remain under care. Unless we are going to deny transplants to children [who also cannot manage their own medications] then we need to make sure that the inability to manage medications for someone under care due to circumstances that render the individual more like a child [not as in someone who otherwise would have the capacity but fails due to already-established criteria which I cannot recall currently] but otherwise contributes/engages in society. [Do not construe this as though I am saying anything to the effect that I wish to exclude mentally handicapped - I just have spent too long wording this part and wanted to emphasize that Paul has exhibited involvement in society as a whole and I need to end this before it becomes a blog entry on a blog entry.]
3. Yes: Paul is on other medications and there is concern as to how his person and his existing medication will react/be affected by adding the necessary medications [of which, the only one that was noted as a concern was the steroid] but the person managing his medications had reached out and was willing to be actively involved in managing/adjusting the other medications to find a balance that worked.

I think every citizen pending a decision to be placed on a transplant list deserves the equal privilege of consideration which I do not feel was given to Paul Corby.

I feel that the information provided demonstrates that [in the specific case of Paul Corby] the deciding physician did not consider that:

1. the autism and co-morbid conditions were not fatal, degenerative, nor significant/uncommon
2. Paul received care assistance in certain areas, similar to a minor child, and would have been able to maintain necessary medications
3. a different health-care provider, with experience in the specific area of Paul's medication therapy and needs, was going to step-up and be actively involved in managing any medication adjustments which would be necessary.

Miscommunication - Mind Blindness...

I was trying to come up with a way to respond to Tanner's Dad Tim and while I was processing/mulling that, JD was taking me to dinner. As serendipitous as this sounds, these experiences coincided in a beautiful example and a horrible misunderstanding.  It was one of those weird moments that you see in television and moves where the person identifies the issue or how to fix a problem due to an epiphany received through a later [and completely unrelated] conversation/problem/random statement.  I just hope I was able to type both situations and the connection cohesively [which would make this an even rarer occurrence, lol].

The epiphany came as JD turned to me with this expression of resigned anger and said, "Well, obviously you wanted to go to Applebee's as you mentioned it over and over again."  In that exact moment I realized that just as ASD's are described as having "theory of the mind" issues; NT's also have no idea HOW we are thinking.

From the beginning:
JD came and picked me up and we had planned to go to the Chinese Buffet.  There are two for us to choose from, but we usually end up going to the closer one.  This time we opted to go to the one that was a little farther away as the cost is similar, but the quality difference is noticeable.  Also, we had not gone to that one in awhile.  We get out there, but it has closed.  [Also - win, it is now a Japanese steakhouse/sushi bar except that JD does not eat sushi.]  So the decision was to either go back to the first option or head out to the other Chinese restaurant a little farther down which is more-expensive.  We ended up in lane on the road which could go straight or right.  Let us pause here for a moment, because I want to express how this works.  Snap your fingers.  How long did that take?  This next paragraph happened in that same amount of time.  Just keep that in perspective as you read it.

1- our lane goes straight and right. 2- right is Chinese, more expensive, and straight is Applebee's. 3- JD likes Applebee's, often wants to go there, I do not enjoy Applebee's.  4- we would spend the same amount of money at either restaurant. 5- if I suggest we could go to Applebee's, I have done something that takes JD's preferences into account and he may enjoy Applebee's.

Catch all that?  Now snap your fingers again just to help it feel real.  I do that, that right there, when I problem solve, think about a situation, consider what I am going to do later, etc., etc., etc.. It is awesome and it is exhausting.  [But I would never give it up. NEVER. It is totally worth it.]

Anyway, back to the narrative:
So I say, 'we could also go to Applebee's if you prefer.  We would be spending the same amount.' And that is where it all went horribly awry.  We go straight, he obviously does not wan to go to Applebee's and starts getting frustrated, he turns around, we head back out, I try to explain myself as he is visibly frustrated/angry/something, he turns around again, goes back to Applebee's and parks.  I said, "I just wanted to offer Applebee's because you like Applebee's, I did not want to start a fight or make this complicated."

That is when he turned to me with this expression of resigned anger and said, "Well, obviously you wanted to go to Applebee's as you mentioned it over and over again."

We ended up talking/arguing at the table and from his perspective, we were at Applebee's solely because I wanted Applebee's [even though he should know that I do not like Applebee's - we had that debate several times because he would want Applebee's add I would always rather have O'Charlie's].  When I tried to state how I was looking at the situation, he would counter to the effect of 'oh, so it is my fault.'  No matter what I said, JD could not understand HOW I was thinking.  In my mind, it did not have to be anybody's fault, there was no need to lay fault anywhere. I just wanted to have him understand how/why I was thinking about the situation as this is a fundamental issue in our communication - he cannot understand my way of perceiving the situation.

There is no emotional component [not wanting to be wrong, wanting to make a situation somebody's fault, etc.] when it comes to situations like this.  It is nothing more than the fact that the words coming out of his mouth are not accurate to what I'm actually thinking/trying to say.  It does not matter how bluntly I state it, he is reading between lines that do not exist and refuses to understand that.

Similarly, I feel that this is where Tim and I ended up in our conversation: He is unable to understand the context in which I think. I've been working on this entry since Friday and initially I was trying to come up with a respectful rebuttal to Tim as I do not like confrontation but also I felt that he was just honestly not able to see my perspective.

I believe that Tim's personal emotions regarding his son get in the way of his messaging on Twitter. As an advocate [and co-founder of AutismAid] his tweets are even more important in terms of autism awareness. He has placed himself under scrutiny and others would take their cues regarding how to regard people with autism.

Aside from hurtful comments made [and the reply that it 'made me think']; I have seen where he has placed the "understanding" on a parent who murdered their autistic child instead of placing that understanding onto the people with autism. Tim also made it his place to declare that I 'gave up' because I was not sitting on top of Twitter, waiting for others to notice our exchanges and ask about them. I also feel that when I made it clear I wanted to have a discussion outside of Twitter regarding treatment options, he provided a format [Twitter DM even though I provided my email] and then ignored the sent DM. Before I offer up my complete rebuttal, I invite Tim to a conversation regarding his experiences, thoughts, etc. as it seems only fair.

So Tim, I ask again for a conversation outside of Twitter. I would like to discuss your thoughts/ideas and find out about your experiences while also sharing mine.

This is a rant, this is only a rant...

So, yea. I was working on stuff today and found a new blog I like and then read this post. [I want to qualify that this post reflects positively on how I feel toward the blog but horrifies me in regard to other people. The blogger did not really understand this one either.]

I did not verify this quote for 2 reasons, 1) I did not put any more effort than just typing "war on autism" into Google and solely looking at the first return and 2) I really do not want to end up on the website of the group that wrote this quote.

“Our children are soldiers in way as they too have sacrificed their lives for the “greater good”. Our kids have been sidelined by this misguided, illusionary war on disease. We must never let our country forget that our children too have paid an enormous price for our country.

“1 in 88 children now effected with autism and 1 in 54 boys in the US. The collateral damage done to American children during this generation will mean a shortage of soldiers, teachers, firefighters, policemen and women, doctors, nurses, engineers,and scientists. Just like the men who gave their lives for the greater good so have our children. OUR soldiers. OUR children. OUR future. Our Freedom. People need to start thinking in about how this crisis will impact our countries 10-15 years from now. The good of our nation is being threatened one child at a time. One day the effect will be felt.”

In case you may have gotten confused by the second paragraph [which states "Our kids have been sidelined by this misguided, illusionary war on disease."] and thought that this was stating that the war on the 'disease' is harming the ASD children [like I did at first] allow me to dissect paragraph two. [Also, if there is a saying regarding the difference between desert and dessert is that dessert has two S's because we would like to have second dessert, why did they not take the second S out of dissect?]

[but I digress - also two S's because I will have to do it again?] Paragraph Two:
'Many children, mostly boys, in the US have autism. This has caused "collateral damage" to American children and means that this generation will have a shortage of people [without autism and able to do worthy work?] to do essential jobs that only NT's can accomplish' ... Like being engineers and scientists?

I swear, does whoever wrote that have any understanding wtft autism [including the broader spectrum] causes as 'side effects' ??? Like, maybe, interests in math and science, ability to see pictures in our heads and evaluate structures, focus and perfectionism, logical problem-solving, and quick mental processing????

But, ya know, there will be a severe lack of social services, medical services, and advances in science and engineering because all these freaking kids went and got themselves all diagnosed with an Autism Spectrum Disorder.

Sorry to inconvenience the rest of you.  I was too busy 'giving my life away before the onslaught of autism - that I was too weak to fight - and now the rest of the country will parish.'

Autism Cure Research - Session 2

So I've been collecting lots of links and reading many articles, but I was struggling on where to start this next entry.  Until I remembered one of the most-profound things I ran across while researching.

I've read [and seen first-hand] several accounts of people wanting their children with autism cured.  When I try and talk to them about how I feel about it, I end up getting flack because I'm "not as bad-off" as their kid.  It is true, I have less-obvious deficits and I am able to be verbal in social situations [though not always in stressful ones].  However, I had a feeling that even autistic individuals who had more-severe deficits likely felt the same way I did [at the basis of this is a different 'wiring' in our brains and we tend to be very logical] and so I recalled something I had read regarding Amy Sequenzia: 

 [click image for link to interview]

Through reading Amy's work [and there are several others through ollibean] I felt that this was confirmed.  While I can understand the pain of not feeling like you're meeting the needs of a loved one [that one truly is both ways] may be it will help to read the words that someone very-similar to your loved one is expressing.  Everybody has unfilled needs.  Even NT kids have issues with bullies and making friends or not fitting in with the crowd or the cool kids.  Everybody wants something which is unobtainable [and if everything is always obtainable I would like my centaur-boyfriend promptly delivered!].  Everybody should also want things that are just out of their reach for it is that want/desire that challenges us to grow.  The giraffe was not born with a tremendously long neck, that neck was earned.  I was not handed the innate ability to automatically decipher the social ques around me, but I strive a little harder each day to learn more.

Once you get into this whole argument over whether I'd like some things to be easier or whether I take or took medication at some point it is almost as though no one understands that some of what makes my life harder also makes it my life.  Yes, I get overstimulated and sometimes I cannot cope with that.  But at the same time, my entire outlook on life is so different.  I would never dream of giving up my intellect, my thought-processing speed, my ability to see things from multiple angles, the gift of being able to look at something without emotional attachment, my amazing problem solving skills [which do get noticed], the fact that bad memories tend to fade [or if I have a bad experience, I cannot remember the person's face who gave me that experience and so I don't treat them any different the next time], my naive and open outlook on life [I always expect the best of everyone], and the list goes on and on.  Those things make me who I am.

Now, I did promise some research in this thing so let's see if we can get more than just 1 external link...
First, I want to start with "'non-verbal" autism by directing to an about.com article.  Summary: "non-verbal" autism could mean that a person is physically unable to orally speak or that the person is unable to use spoken language effectively/cohesively/etc.  Those people may [and several do] have the ability to speak but may do it through written work, picture cards, sign language, etc. 

I really intended to go more deeply into research and cures, but the farther I dig, the more upset I get.  I have to once again rely on MamaBeGood [because I really do not need to reinvent the wheel] for her awesome words.  I think the root of all this "cure" nonsense is the way in which the narrative about autism is expressed.  NT parents, caregivers, etc. hash and vent all the terrible things and there is not much focus on the positive things.  NT's frustrate the biggeldy-puck out of me yet I don't think they should be cured.  I've gotten into an argument about acceptance and that since I'm part of a minority [which is supposedly increasing, though I do not fully believe that] I should have to adjust instead of a greater population learning about me.  That is completely against the social narrative of this country in which I live.  There are far less people in wheel chairs, should we remove the wheelchair access ramps?  No.  We all deal with access ramps because of that portion of the population that relies on them.  How many times have you used the handicap door button? [directed to those of you who do not have a necessity for this item]  Did it not make your life easier when you were trying to get into a building while carrying items?  Maybe if you can adjust to take ASD's into consideration you may also find parts of your life get easier.  We really do have things to contribute if you give us a chance.  We're not smallpox that needs to be eradicated.

I honestly meant this to be far more "social discourse-y" but it actually ended up rant-y and it's almost 2am [which is my bedtime].

The stresses of struggling within a broken system

As I'm rounding out year four of being subject to "the system", I've had a lot of time to reflect over past actions, current consequences, and possible future outcomes.

I'm not so crass as to imply that I rate status with Robert Burgdorf or Crystal Lee Sutton *1 - however I feel that while the world is not fair, it should be just *2.  I look back at what I have dealt with and realize that, yes, there was an easier road; I just wouldn't have been able to look myself in the mirror every morning.  Never-the-less it has been a trying four years with at least two more ahead of me.  I'm tired, disheartened, and - unfortunatly - now lack belief in the systems designed to protect the average person [let alone the "special needs" individual]. 

There are many others, who are legitimately trampled on by a system which is broken, and many do not fight back because they have seen the fall of those who do.  Or maybe it is because they know they need to keep paying for that roof over their head or that food on the table.  This does not make them weak or stupid anymore than my fighting makes me strong or smart - or really vice-versa.  Sometimes I look back and wonder if I really made the right choice. 

I started fighting for my rights under the ADA so that I could maintain stable employment which would allow me to live on my own and care for myself.  I also wanted to avoid disciplinary actions based on difficulty working the same as everyone else because of my "diffability." [No, I do not have a strange speech impediment I just borrowed this from Ollibean]  I didn't really do either of those.  I do not write this to support a fight for what is right or to condone those who do not - I merely seek to reflect on what I have been through/am going through and take a deeper look at the broken system and why it is broken.
My hypothesis is that people with "invisible" disabilities are easier for employers to let [or intentionally force] "slip through the cracks" and ultimately mistreat the most *3.

Lack of understanding or knowledge [and sometimes the subsequent stupidity] leads to friction with coworkers and management (read as harassment) instead of support.  This friction complicates things by making it more-likely that attempts made to appeal to the next supervisory level fall upon the ears of people who have already been influenced by the opinions of people who, quite frankly, have no idea what they're talking about.  It also makes it harder to connect and maintain connections with other coworkers.

It doesn't get any easier when you struggle for your rights, only to find that none of the entities put in place to protect those rights can work efficiently or even with any weight behind their decisions (when the decision is in your favor).  My posts labeled as "Ms.Management" will address some of these issues.  Unfortunately, due to the nature of what I'm going through, some of the specifics (agencies, etc.) will not be detailed and some posts may be more general until a later date.  Even so, I hope these posts may eventually serve to be a source of encouragement, information, and possibly just to let others know that they are not alone in this struggle. 

So... my weekend...

I had all these articles and blogs marked to read but, you may have noticed I was AWOL starting Saturday... Saturday afternoon I was starting to work on stuff when JD came and picked Rocky and me up. We went to a farmer's market and then to JD's. JD made dinner and then we watched movies while Rocky alternately explored and cuddled with us. I ended up staying at JD's overnight.  Sunday JD took me out to run my errands (groceries, supplies for Rocky, and then a few DIY apartment projects - including hanging lamps so no more cords for Rocky to chew).  JD brought me home and helped me put everything away (and hang the lamps) then he spent the evening here.

I know this doesn't equal any work toward my blog (or an ever-increasing number of interesting links) but I had a nice weekend.

Just plain freaking angry...

Okay, so I acknowledge that I started this blog so that I could deal with a variety of issues (including those caused by the abuse/neglect/ignorance of my family)... However, after I had started, I thought maybe I would try not to do exactly what I'm about to do...  *WARNING* This is about to get negative and ugly...

(and so, I may have just secured the interest of 50% more people... lol)

Autism Cure Research - Session 1

Okay... I currently have so many ideas for posts that there are 14 drafts (outlining posts) and so far, I've 3 entries and none of them were ideas I had sketched out initially.... (okay, 1 is just me saying "hi" so I can cut myself a little slack there...)  So this only counts as one of those ideas as I was determined to do this after my rant (see yesterday's post... lol)

So, to begin (and no offense was intended...) I started with the individual who initiated yesterday's discussion - twitter account Age of Autism.  Okay, actually I started with some research, but the rabbit hole was too deep so I needed to start the entry and document this stuff because later I was not going to be able to put it into a cohesive order... so this isn't actually the first thing I saw (but you get to! yay!):

I believe the person we were talking with yesterday was Kim Stagliano...

Tweets too short for this discussion...

I guess "enough" depends on the type of treatment... but in my experience, people (even loving, caring, parents who "researched") don't understand what they're "curing."  Is the treatment temporary (stop doing/taking X and the effect stops) or invasive/permanent (I don't have a good example... are you going to operate on my brain?)?

Some 'behaviors' that are 'cured' aren't really cured, they just give the person with ASD more stuff to have to deal with.... in a world that can already be overwhelming.  Instead of letting us cope and finding ways to effectively let us manage symptoms/input/etc. from what I've seen people want us to be more "normal" (and I'm not alone in that opinion).

Did somebody understand the actual problem they were trying to fix??  Or is it going to be another instance where they taught someone with ASD to maintain eye contact - regardless of whether they could effectively communicate while making eye contact?  If all you want is "normal" then, I'm sorry, but you need to get off my planet.  I cannot always look you in the eye and make cohesive conversation - there's too much to process.  All you did was make an NT feel better.

And yes, we do get a little defensive when you want to "cure" us... How about we cure you.  One day if there are more ASD's than NT's, want us to try and find ways to change how you interact with the world in ways which might keep you from being able to interact?  This is what I mean about more information.  The treatments I've seen where they "fix" a behavior, they didn't address the reason why the behavior occurred, only took it away and replaced it with nothing else.

Did somebody consult ASD's regarding the therapy (in regards to behavior therapy, possibly medication) to understand why the behavior existed and, if modified, what would need to replace the behavior or make the behavior less distracting?  Are the people who developed the therapy and who are praising the potential outcome all NT's?

Twitter conversation below the jump.

(and I included the "medical acceptability" part at the bottom even though I want to talk more about that too... I just can't right now.)  Or maybe I can a little... Medication reacts very strangely with ASD's... I already didn't think they did proper testing on drugs (samples never include alternate groups such as elderly, overweight, groups with other medical conditions) and so 'wackadoo' stuff ends up happening to people in those groups.  Even drugs that are "tested" and "safe" end up with recalls, killing people, or causing huge problems later...

Dealing with Failure...

Failure can be hard to accept, especially when your initial reaction to any idea is opposition [oppositional defiant disorder can be included in the Asperger's package].  It's especially hard when you feel like so much depends on your success... trying to escape a bad home situation, trying to keep a job, trying to finish just anything... it could be a small task, or a large one, but if something keeps you from succeeding [especially if it is yourself] it can be hard to cope with that failure.

Inspired by: Failure?

First Post! Hello, world!

My name is Drea Erimentha and I have Asperger's Syndrome.  Obviously, this is a pseudonym but I feel it accurately describes me. :)