Wednesday, November 20, 2013

Autism Speaks: Go Away, I Don't Have Time For You

  Trigger Warning: Autism Speaks, language

   Last week Autism Speaks decided to fear monger for apples...err donations once again and demonize my neurology, calling us burdens and saying we cause families to merely exist but not live.

  Suzanne, are you seriously that upset about the bagel dates you missed back from 2006 or something?

   I didn't respond or participate in this flash blog because I felt the community pretty much said what needed to be said to you.  Yet like ketchup spilled on the floor and forgotten you stick to my shoes and take an awful lot of time and effort to get rid of. 

   You say I am an existance but not a life.  Well I must have a lot of existing to do, and you're getting in the way of it.

  I have about 4 weekly projects at work to do.  My boss is on vacation which means that I have to cover some of her work too.  My supervisor is having a breakdown which I have to cover most of her work too.  The Sunday part timer decided since people are on vacation and/or having breakdowns that he does not have to do his share of the work, so I have to work on that too, all this so that we keep our squeaky clean performance related metrics above average and we get raises.  My annual evaluation is in 10 days by the way.  We are rolling out new software and procedures to handle returned to stock inventory today, as in right now.  I have neither time nor spoons for you.

  I am missing a workout and physical therapy on my leg right now to deal with your bigotry.  That is the reason that I stopped blogging over the summer.  Veinous deficiency caused massive, painful, bleeding wounds to reopen in my leg.  I am working hard to minimize my weight and blood pressure while improving my blood flow.  I have to make up this workout, it is important, which means I will be trudging my exhausted, painful leg up a stair climber then lifting weights at 11pm tonight after work.  You still mad about those bagels?

  I have to worry about the 1-2 trips to the doctor's office I have to make weekly, and the hundreds of dollars weekly this is costing me.

  I have to worry if NYC public transportation will get me to the doctor and to work daily.  New Haven Line trains are consistantly 15+ min late on a good day. On a bad.....and what is becoming a normal day, there is usually a bullshit excuse for Metro North to shut down this line for 1-2 hours at a time.  Fuck "Autism Every Day", Suzanne.  There are real issues like Power Failure Every Day, Track Congestion Every Day, Police Activity Every Day, Branches on the Track Every Day and Signal Failure Every Day.  I have to quickly plan and find alternative routes to get to where I need to go and make the time for them.  I don't have time for your nonsense.

  Ahh, spare time, that 1-2 hours between when I get home from work and time for bed.  (Unless I need to go to the gym).  Do I....stim and perseverate to music, do I practice meditation and yoga and silence my mind?  Do I write?  Do I keep in touch with family, which is a battle for me?  Do I clean my bathroom?  Guild Wars 2 has new content out.  I like Final Fantasy XIV but I don't think I can make time in my life to commit to another Everquest/Warcraft style raid MMO.  Sparrow has a book out that I have on my Kindle, or should I reread Mirror Project?  No, wait! Catching Fire comes out this week, I should probably reread that. Portal 2 has been sitting in my Steam library for a year now.  I heard it's a classic.  I have 3 more training modules due for work this week too.

  I don't have time for Autism Speaks, and it's bullshit inaccurate fantasy view of my busy autistic life.  Many people have called for AS to change its ways.  I call for it to go away.  Manufacture jigsaw puzzles and school supplies if that's your thing.  You can even keep your logo.  Just get out of public advocacy.  You suck, no gentle way to put it.  You hurt Autistic people with your words and rhetoric.  You say we exist but not live.  Perhaps were not "living" as you define it because we spend so much of our time, our thoughts and our spoons prying your hands off of our throats.  Countless people spent countless hours and shed countless tears reacting to the pain you inflicted.  We don't need our rights and our time taken away, life is cruel enough.  Retire please.  Go Away. 

Monday, October 21, 2013

NOXO Autism Aid....are you f*****g serious?

TW: Satire, curism, obligatory mention of Autism Speaks
   Been a rough summer.  I'll get into that eventually.  But what inspired me to dust off this blog after uhhhhh... 4 months?  (seriously it feels like I made my last post yesterday).

  I woke up and checked my twitter feed for something to break me out of my morning doldrums.  Leyland quitting the Tigers..... /yawn?  Never liked him anyways.

  But what is this?

  Finally, the cure to all of my woes!  The answer to all of my questions, delivered to me in the form of a balm!  A magazine for autism parents has posted evidence of a cure for autism symptoms!  Must be legit! However, I had to investigate, I had to know for sure.

   The article on Yahoo finance the tweet tells us of how one mom used NOXO lip balm on her two autistic children.  She states that it makes them "mellow" and she was able to stand in a line with them at a fair.  It works for up to 5 hours! That's it!  One mom, two Autistic boys, one line at a fair.  TEH CURE!  That's all the information I should need.  Let's get this out to the world.

 "NOXO’s solution provides unprecedented hope for children and families affected by Autism. NOXO Autism Balm(TM) stops the frequency of behavioral issues that trouble children with sensitivities by stopping sensory issues including odors and inducing a calming effect. The Autism Balm provides quick relief to the overstimulated child and allows families to enjoy public settings with fewer worries.

NOXO Autism Balm(TM) is similar to a lip balm but is applied just below the nostrils on the upper lip. Allowing the natural formula to be inhaled and take effect. NOXO’s solution is safe, easy to apply and non-invasive. It works on your body’s natural processes and responses. It is the first successful product to address behavioral issues triggered by sensitivities."

  That's great!  No more awkward stimming.  No more stares and chuckles.  I have been freed of my naughty, perverse nature at last.  All I have to do is put on some of this lip balm.

  But wait....damn you autism, damn you cynical, anxious nature.  Damn you all to hell.  I must know.  What are the wondrous natural ingredients of NOXO?  Where is the science and the studies behind it all.  Surely they exist!  Yahoo finance posted this article, and an autism mag.  It must be true.  They even provided a link to their website for more info.  

  Uhh waiit.  OK, their "wellness" solutions are "based on Nobel Prize science".  What Nobel Prize and what science pray tell?
  We have more statistical evidence that seems to suggest that the makers of NOXO Autism Balm have, in fact clicked on the front page of Autism Speaks website.
  1/88 ......Check
  2 million Americans..... Check
  Hypersensitivity.... Check
  Good job folks!  I was hoping for more information though.  Like the studies and research that shows that the product works.  

 Never mind that.  NOXO was developed by a biochemist and formal Naval commander that has been developing......wait.  No it wasn't!  Lets read this paragraph carefully.

   Advanced biochemist and former Naval Commander, Dr. V. Ruth Pinney was tasked with developing an alternative to Tear Gas for crowd dispersal. With the development of this “Stink Bomb” came the need for our own forces to have odor protection and be able to be effective in controlling dangerous crowds. The result was Noxo Odor Defense Pro™ and NOXO Autism Aid™, now in its fourth generation; More powerful than ever before for personal use under the nose and other inconspicuous places, it's odor protection that travels with you. NOXO has been providing people with protection against odors since 9/11
  Lets summarize.  A Naval scientist invented a stink bomb as an alternative to using very harmful tear gas for crowd dispersal situations.  NOXO developed a balm that supposedly counteracts the effect of this stink bomb, then engineered it into a panacea that will prevent Autism stimming.  A decorated Naval biochemist did not invent NOXO Autism Aid according to this article.  Just want to have that clear.  

  My heart sinks to the floor.  My hopes beginning to dash.  No study, no science, no information.  Just carefully hidden woo.  What are the ingredients?  Perhaps I could investigate what makes up NOXO on my own to salvage the possibility of a purchase.

   Ingredients: A special proprietary formulation of Phytonutrients and Phytochemicals taken from plants, flowers, roots and seeds. All ingredients are in a medical grade Petrolatum base that is FDA approved. 

  In other words....none of your damn business what your putting on your kids' lips.  But the petrolatum that carries the Colonel's secret recipe of herbs and spices is FDA approved. My soul shatters, my wallet closes and I am resigned to another day of flapping and fidgeting at the train station.

   In all seriousness, Autism Parenting Magazine should be ashamed of themselves for tweeting this worthless crap on desperate misinformed parents.  

Monday, July 1, 2013

Welcome to the World (A Moment Without White Privilege)

  Trigger Warnings: Racism

   The Trayvon Martin trial is in full swing.  It is rapidly becoming a fiasco and I fear whether he is going to get justice.  However I am not blogging about the trial today.  Whenever I see his name or hear about the trial I think back to something that happened to me shortly after Thanksgiving last December.

   It was unseasonably warm and I was returning home from an unusual day shift at around 6pm.  (I usually work nights).  I was phoning my aunt, walking in my neighborhood towards the house I live in.  Its a "good" neighborhood.  Ethnically diverse but financially affluent.  Race means not so much as your job title here.  Reverend, Rabbi, Doctor, Lawyer, Judge are the kind of folks you find here.  I would guess the average property at about $1.5 to 2 million.

   I rent the 2nd floor of a beautiful house here from an elderly preacher.  His son rents the bottom floor, and he lives here, though he is often in Coney Island where his storm battered church is.

   This area was a target for vandals and thieves in the aftermath of Hurricane Sandy.  In the 12 days we had no power here, many people who made the choice to leave their property were robbed blind.  Most people in this neighborhood stayed though, and an inpromptu "neighborhood watch" was formed.  People checking on each other, staying awake and checking on unusual vehicles and people walking around (if you could see them....there was absolutely no light).

   Twice in that 12 day period, both times before I returned home from work there was an encroachment on the property by an unexpected party of people or a vehicle.  Both times a flashlight to the face expedited their retreat before and defense had to be made.  Tensions and anxieties were not unfounded.

   About 3 weeks after power was restored I was approaching my home at an hour I am not usually around.  It was unseasonably warm (50ish) but breezy.  I was wearing dark pants and a large cotton hoodie with the hood up.  Between the curb of the road and the sidewalk are some ornamental boulders.  Large enough to sit on.  My cell phone didn't work well in the house and it was about as nice a day as we were going to have for the next 5 months in all likelihood.  So I sat down and continued my conversation.   As I talked to my aunt, a car left the driveway of my home.

   My family loves hearing from me, even though I am about as inept on a phone as many Autistics seem to describe themselves.  My phone vocabulary consists of "yes, no and uhuh" and it takes time for me to process the other end of the conversation.  What I am telling you is that this was neither a loud or passionate conversation and I had little to no body language.  I was sitting on a rock in front of my home speaking softly, giving 1 or 2 word replies. 

   Two police cars pull up to me and officers get out with dogs on leashes.  I did not end my conversation because it did not even remotely occur to me that they were there to arrest me.  They approached me with the dogs and asked me for identification.  I ended my conversation and provided it to them.  I asked them why they were here and they told me that someone had reported that I was trespassing on the property.

   I told them that I lived on the property and I had not yet even set foot on it, I was sitting on this rock the whole time.  At this point the police figured out that I was no threat, but they had me wait with an officer while the other officer entered the house and spoke with the caller from within the house.

   The caller was the preacher's elderly wife.  She apologized and the police let me go.  I was rather upset...borderline meltdown, but I have enough restraint than to raise my voice to my landlord's wife.  She had not actually looked out the window to see who it was near the property.  Her son who rents the bottom floor had called her.  He was in the car that departed shortly after I had sat on the rock.  He told her someone suspicious was on the property and she panicked and called 911.

   I was upset.  I do not like to have cops and german shepards in my face for no reason.  I left the house again and called my aunt and screamed obscenities while stomping down the road and had a total meltdown on the street.

   Later that night, the son called me.  I asked him how he did not know it was me on the rock, I sit on the rock when I make calls almost all the time!  He said he car he left in had tinted windows, he couldn't see my face because of the hood and he thought I was Black.

   So a Black man sitting on a rock doing absolutely nothing with a hoodie on in a working wealthy class neighborhood warrants being approached by 2 armed police officers with attack dogs.

   I told my Black coworkers about this the next day.  "Welcome to my world" is the general response I got.

  Perhaps I haven't told you the saddest part of this story though.  The preacher and family are also Black. 

Thursday, June 20, 2013

Bill of Rights (2013 edition)

Amendment I - Congress shall make no law prohibiting the freedom to write in a diary, and to keep such diary in a safe or stored under a mattress.  All electronic communication and public speech shall be monitored, edited, removed, and seized at the leisure of and for the use of Congress or any registered incorporated entity. Congress shall make no effort to approve a permit to peacefully assemble and shall dismiss all petitions to the Government for a redress of grievances, especially from

Amendment II - A well regulated militia, no longer being necessary for the security of this utopian State, the right of the people to keep and bear water based arms (super soakers and balloons) and plastic cutlery for the use of nutritional intake shall not be infringed.  All obsolete arms and metal kitchen utensils shall be seized. 

Amendment III - No Soldier shall in time of peace receive pay or medical benefits for injury inflicted in time of war.

Amendment IV -The right of law enforcement to be secure in their seizure of persons, houses, papers, effects and electronic devices and communications, and to search and seize for any reason, shall not be violated, Warrant shall be issued, for any cause, supported by oath or affirmation via text message or Twitter from a Judge of the Law, paralegal under employment or any spouse or child or person with access to the electronic communication of the Judge, and not particularly describing anything specific.

     Example: Officer: @Judge OMG i c ppl flapping in store
                      Judge: @Officer WTF?!?

Legal Warrant and permission to use force granted.

Amendment V - No person shall be held to answer for a capital, or otherwise infamous crime, unless on a presentment or indictment of a mass media organization (CNN, Fox, Viacom, Time Warner, Disney), except in cases arising in the land or naval forces where they will be held indefinitely without trial or publicity.  Any person shall be put in jeopardy of loss of life and limb repeatedly by mass media until found guilty in a Court of Law.  Life, liberty and property may be taken with no process of law.  Private property shall be taken for public use (such as cell towers and parking lots) with no compensation.

Amendment VI - In all criminal prosecutions, the accused shall enjoy free food, digital cable, broadband internet and conjugal visits during their delayed and publically televised trial, by a racially and gender biased Jury of the State in a financially privileged district in the somewhat general vicinity of where the crime was committed, to be confronted with the witnesses against him; to have compulsory process for eliminating or bribing witnesses to his favor; to have public Counsel file his guilty plea for him should he be unable to afford private Counsel.

Amendment VII - In suits of common law, where the value in controversy exceeds twenty dollars, the right to trial by jury shall be preserved, and no judgement rewarded by jury shall ever be paid, as the defendant enjoys his right to unlimited appeals, rescheduling and bankruptcy protection.

Amendment VIII - Excessive bail shall not be required, nor excessive fines imposed, nor cruel and unusual punishments inflicted on any citizen of high public regard, with personal wealth exceeding one million dollars and or having been granted a celebrity reputation by mass media. 

Amendment IX - The enumeration in the Constitution, of certain rights, shall be construed to deny or disparage others retained by the people as much as possible.

Amendment X - The powers not delegated to the United States by the Constitution, nor prohibited by it to the States, are reserved for local law enforcement respectively, or to the media.

Monday, June 17, 2013

Fun with Fabricated Data!

Trigger Warning: Autism Speaks, satire

  With great regard, I have heard that Geraldine Dawson, chief "science" officer of Autism Speaks has called it a "career".  I was hoping that they would replace her with a real science officer, like Zachary Quinto, Leonard Nimoy or a hologram of Spock.  (I would settle for a poster or action figure honestly)

   Disappointingly however, we shall get some guy named Robert Ring who was the vice president of translational research (WTF) to take her place.

   Mr. Ring has a big responsibility managing the $24 million dollars AS spends on "science" and not supporting Autistics and their families.  The anti vax movement has gotten stale.  Andrew Wakefield's fabricated data is so 1998!

   I would like to help Mr. Ring bring Autism Speaks into the still kinda newish millenium with some new and exciting woo and fabricated data.  My fabricated data to be exact.

   I have a lab coat and my TI-82 graphing calculator I used in high school.  My dataz look legitimate and presentable. I have found that vapors from the fecal matter of a certain mixed breed of the species Canis Lupus Familiaris  (Chiwawa and Shih Tzu to be exact) inhaled in combination with the polluted sulfuric dew that falls in the vicinity of most urban and suburban populations causes teh autismz.  Here is my work.

   Embrace the opportunity!  Embrace the new fear and hysteria.  These dataz can be your biggest hit since "Autism Every Day" back in '09.  You can advocate for animal control!  You can spread your message to dog owners and finally get them to scoop their dog crap off the sidewalk.  You can logically correlate to the public the rise of autism diagnosis to the chiwawa fad of the late 90s , and away from real causes like changes in diagnostic criteria .  You can blame turn of the millenium Taco Bell advertising for creating the autistic tsunami.  You can further villify Paris Hilton.  You can further villify anti green Republicans.  You can advocate for sleeping in until long after the morning dew evaporates.  12-8 can be the new American work day, courtesy of Autism Speaks!  This can be a PR windfall.  

   My dataz will be questioned instantly by the scientific community and the kindergarten student community from day 1.  It will be completely disproven about an hour later on day 1.  Don't worry though Mr Ring.  You can roll with it for at least 5 years.  Maybe even milk a decade or more out of it like with the vaccines. 
The donations will roll in.  The New York Giants and some other sports clubs will wear blue all the time in honor of Autism Speaks.  Your legacy will be set.   

   Please please please please consider my quackery and nonsense over Jenny McCarthy's when setting the new future for the Autism Speaks "science" division.  

(Or you can invest the millions in real support for Autistics and real research, but that idea is probably as far fetched as my fabricated data)  

Monday, June 10, 2013

Let's face it, I'm Depressed

  Trigger Warning: Autism Speaks, ableism

   My enthusiasm for blogging, as well as most of my other personal goals have vanished since mid April.  This is a repeating pattern in my life time and time again.  Socially I have completely cut my self off.  I started playing an MMO regularly again, and I don't even communicate in the game.  I just soloed my way to max level, playing the game the way I autistically live my life.  There, doing my own thing, surviving, but not a part of the community.

   I have become a work bot, despite the fact that my work is not a pleasant place.  My day is: Wake up, make the excuse to not work out, avoid housemates at all costs,  go to work, suffer but function, return home making the excuse to skip the gym and skip whatever else I need to do on the way, play game and go to bed.  Rinse and repeat, 6 days a week.  On the seventh day I rest.  Not like God, but like a sloth.  No laundry, no cleaning, no exercise, no family, no friends.

   Every day I am surrounded by ableism.  Ableism that has always been there and that I did not see.  That I cannot unsee.  A female coworker I once had a crush on made a comment that she doesn't like a customer known to be autistic.  The exact conversation as follows.

  Coworker: "I don't like her, she won't make eye contact with me"
  Boss: "Its a part of her disease"

   I want to scream, but I need my job.  My coworkers, my only human contact at this point in my life hate me and they don't even know it.  The world hates me because its been taught to.  The hatred is everywhere.  The fear is everywhere.  This crap is everywhere.

   I see it in parks, on peoples lawns, at highway access ramps, on bumpers.  It's always been there.  My coworkers are ableist, my family is ableist, most of the humans I come in contact with are ableist.  And because I am presumed weird but neurotypical, because I hide so well, I am expected to participate in the ableism.  My kindness and patience towards people who are neurologically different as of late has been noted and critiqued.  

  I am alone.  And I find it harder and harder to do what I need to do to survive every day.  I have always found it hard.  I cling to the belief that I will shake it off.  Just like I tried to shake off flu like symptoms 7 years ago and wound up on life support.  Just like I tried to shake off a large unhealing wound on my leg for a year and wound up on disability for 3 months.  

   I can't shake this off.  I don't know how many more "shake offs" I will survive.  I could use friends right now.  Ones that don't require a neurotypical performance.  I've never said that before.  I've always insisted that I need no one.

Friday, May 31, 2013

Her Name is Sabine

Trigger Warning: Institutional mistreatment

  I chalk up my inactivity this month to one third insecurity, one third physical illness and a resulting lack of spoons and one third good old procrastination.  My rant about why I don't support Autism Speaks received a lot of attention from some cool people in the community.  This inspired me to blog more, but it also happened when flu like illness got so severe that 100% of my energy went towards surviving a days work. 

   I was on a planned stay-cation this week, which would have been a week off of work regardless because I finally became completely too sick to function.  I did manage to catch up on some necessary viewing while I was ill.  I'm speaking about Wretches and Jabberers and Loving Lampposts.  I loved them, they were moving.  They were everything others in the neurodiversity community made them out to be.  I also watched a documentary about a guy with Aspergers who was arrested for stalking 80s pop idol Tiffany that I passed out in the middle of.  I'd rather not remember.  I will rave and cite and quote and gush over Wretches and Jabberers and Loving Lampposts in the future repeatedly.  Of this I am sure, but today I want to bring to attention an autism film that I have never seen mentioned in the community before. 

   Her Name is Sabine is a documentary made in 2007 by an acclaimed French actress named Sandrine Bonnaire about her younger sister Sabine, who is autistic.  Sandrine has captured a lot of her beloved sister's young adulthood on film.  Young Sabine, is intelligent, witty, charismatic autonomous, and infectiously happy in the footage provided.  This footage is interwoven with the shocking footage of present day Sabine (age 38 at the time of filming), who is unrecognizable.

   The documentary is available on Netflix to stream and Amazon to purchase subtitled in English is you would like to watch it first, if you are up to it.  Huge Trigger Warning on this film, it is at times heart breaking, emotional and difficult to watch.  Otherwise, huge spoiler alert for the rest of this post. 

   In an opening monologue, Sandrine tells us that Sabine is autistic.  She was different, but happy.  She was talented.  At age 28 she wound up institutionalized and heavily medicated.  She spent 5 years there.  Then we are introduced to the aftermath.  Sabine lives in a group home at the start of shooting.  She is lethargic, anxious, stubborn and extremely violent.  She attacks her caretakers and other residents with her fists and eating utensils, she spits and screams.  She melts down frequently.  She is verbal but it is tough to have a coherent conversation with her.  She challenges her caregivers and her sister at almost every opportunity.  Honestly, she is everything that the rhetoric of tragedy pushers stereotype us as. 

  But then this footage is broken with footage and information from her past.  Her past which is full of everything that the tragedy pushers don't want you to believe.  Young Sabine is vibrant, confident and competent.  She is not the biggest on eye contact but she is engaging and capable of sophisticated conversation.  She can dance, she can swim, she knits sweaters, makes dolls and plays the piano.  She loves America and taught herself English.  She composes her own music, she travels alone, she drives a scooter.  The film goes back and forth between Sabine's present struggles and her past, and Sandrine slowly introduces more facts about her life pre-institutionalization, family history, how she wound up in the institution, and some details of her maltreatment there.  The difference between Sabine pre and post institution is so profound that they do not physically resemble each other at all, and I did research after watching the film to confirm that this was in fact a documentary and not a dramatization with actors or a work of fiction. 

  This documentary is heavy on human experience, and light on science.  Neither Sandrine, nor medical professionals treating Sabine, during her institutionalization or afterwards seem to have much expertise on the definition of autism.  The lack of science is quite frankly one of the problems that led to Sabine's deterioration.  The film displays the importance of presumption of competence.  Sabine's family in her youth always presumed her competent, and she found her own ways to flourish as a human being. 

   Medical professionals presumed her incompetent and thus rendered her.  Though very dark, the film has a very touching ending and leaves Sandrine with hope that her sister may someday recover from her institutionalization and mistreatment. 


Tuesday, April 30, 2013

The wrong path

  I had a plan for this month.  I planned on writing at least a dozen scathing posts against Autism Speaks.  I planned on criticizing any negative piece of media against autism I could find.  I planned on dropping scathing, sarcastic, vicious, merciless pieces of literature all over my blog and anywhere I could.  That's the kind of awareness I was acting for.  Be aware of the autistic ass kicking that awaits around the corner.  Accepting autism is a better choice than having me appear as a commenter on your story or blogging about it. 

   I was becoming quite the activist in real life too.  I have a co worker I have had an up and down work relationship with for 4 years.  Not many people at work like this person.  Usually it is for a legitimate reason.  She does some things that aren't cool.  Like racially loaded comments, blatant harassment and occasional violence.  She hit me once, a long time ago which is funny since I am 3 times her size (I laughed at her at the time).  And she tossed a chair in the vicinity of a coworker a few years ago.

   I decided I was not going to compromise with this person or situation anymore.  I increased my rate of complaints against her and took them to the highest levels.  I confronted her in a direct manner every time she did something offensive immediately.  I spoke openly to management about their disregard towards my situation and our problems with her over the years.  I told them about how  they violated my employee rights with their voluntary ignorance and how I demand to work in another store if they wont rectify the situation.  I threatened with action daily, and spent a lot of my recharge time actually doing it.   Better to be feared than loved.  Fight the power became my credo.

   Through this type of aggressive self advocacy I became a stronger person, right?


   Through this aggressive behavior, I had the return of panic attacks and anxiety the likes of which I have not felt in a decade.  The kind of attacks that led me to quit my job and shut down 7 years ago.  Customers and people I know approached me and others in concern over my foul demeanor.  My habitat, autistic enough as it is fell into complete decay.  Housemates noticed that I did not look well and that I was avoiding them even more than usual.  I had several meltdowns at work, something which was not a huge issue for me the last few years.  I have experienced nightmares, headaches and symptoms of high blood pressure.  I even did something self injurous in plain sight.

  Almost all of my blog posts have been written out, checked and double checked and thought twice over before I posted them.  Until this one, which in a moment of rage after reading the article I wrote and posted over the time span of 10 minutes.  Read the commentary, where it is pointed out that I missed a lot of positive in the article (he's right).

   This kind of advocacy accomplished nothing except establishing to the world that I am enraged, pissy and at wits end.

   I am lucky to still be employed.  Then again at my job they don't care what kind of an attitude you have when you show up, as long as you are willing to show up.  Which also explains why my co worker is still there. 

   I did more damage to myself than to my enemy.  I used fear and intimidation to give me power, to get my way.  Just as fear and intimidation were used against me.  I did not forgive mistakes, just as mine are not forgiven.  I beat her at her own game.  I wielded the master's tools.  I lowered myself.

   I need justice, not revenge.  Love, not hatred.  I examined what I was doing with my time.  Particularly spending it on complaining to HR at work and on the internet searching for more nasty things about my newly discovered neurotype that people say and raging against them. 

   I am not going to change my situation at work, and she is not going anywhere.  She is very mindful not to offend me at the moment.  But in the long run, I doubt it will change, because I cannot change her.  I can only take further action to strip her of her ability to provide for her family.  Or I can look for a better situation for myself.  Perhaps a new job with less chaos is out there for me.  It is certainly less stressful to look for new possibilities in life than writing and calling the HR department and whining to managers.

   I am not going to serve any Autistics or change anyone's mind by returning hatred to sender, possibly doubled over.  The solution to negativity in my life is not to become more negative. 

Monday, April 29, 2013

Moment of Truth Celebrates 1000 Ausome Things #AutismPositivity2013

  Which characteristic of autism is my favorite?  I don't know.  Just being myself is ausome.  Its not possible for me to identify which trait of autism is my favorite.  Six months ago I did not identify as autistic.  I could not define the terms "stim" or "echolalia", "perseverate" or "executive function".

  I knew that I like to rock, flap, skip and shake my head a lot in private.  I know to do it in private because it got me bullied in school.  I used to see this as a waste of time and I was ashamed of my need to do this.

  I knew I talk to myself a lot and repeat the same thing over and over.  Again, I make sure to stop if I notice anyone nearby.  I knew I like to go outside with headphones on.  It keeps the annoying noise away and camouflages my repetitive speech as singing.

  I knew I am socially awkward, and struggle in conversations.  I knew I pre script most small talk.  I knew I struggle with eye contact.  I knew I don't really want to talk unless it is something I am interested in.  I thought it was a self-esteem problem.  Something for me to fix about myself.

  I knew I have a hard time setting a plan into motion, especially a plan that takes me out of my routine.  I often forget what I was planning until it is too late.  I often request help from others in carrying out a plan.  I thought it was because I was lazy and unmotivated. 

  What I didn't know was that there was nothing wrong with me. This is just me being myself, not a group of personal weaknesses standing between myself and happiness.  This is the way I work, the way I live, the way I function.  I don't need to be fixed.  Cure not necessary. 

  The same characteristics that once brought me shame and embarassment now bring me comfort and joy.  I am what I am.

  What's ausome about autism?  Acceptance

Sunday, April 7, 2013

Autism, with them.

    Trigger Warning: Ableism, Strong Language

   Here is a story with a misleading headline.  The headline reads "Autism diagnosis shatters Welsh family who go through 'dark times' dealing with aspergers".  Read the story.  Read the ableist words of the mother.  Read the excuses of the abandoning father. 

   The headline is misleading.  Autism did not shatter this family.  Privilege shattered this family.    The lack of courage to deal with life shattered this family.

  The girl, Holly struggled socially, had repetitive behaviors, and sensory issues.  A therapist called her a "manipulative drama queen".  The mother believed her daughter was just plain "naughty".  She was bullied and abused at school.  The family stayed together, perhaps on the belief that the child will get over herself and become their darling Princess Perfect that they feel entitled to. 

  At age 9, Holly is diagnosed with Aspergers.  The father can't "cope with the diagnosis" so he leaves.  And that is autism's fault?  That is illogical misconceived bullshit. 

  An autism diagnosis should have been a relief and a positive for their family.  Lucifer did not creep out of the bowels of Hell to give curse Holly and family with autism at age 9.  Holly has been autistic every second of her life. Holly has experienced the strengths and drawbacks of autism every second of her life, and now her parents have been given valuable knowledge with which they can help their daughter cope with her unique challenges.  Holly is the same girl with the same skill sets one second before and one second after diagnosis.  Nothing was lost, and knowledge was gained. 

   Instead daddy goes on a bender, and we blame autism.  Daddy took a hike because his once potentially perfect little girl no longer lives up to his ill conceived illusions.  His privilege has been violated.  He now realizes he has a disabled child and he doesn't feel he deserves that challenge. 

   He is not a victim of autism. He is a coward.  He ran away. 

   The mother says she would have rather have had a "naughty" child than discovered that Holly have autism.  Are you fucking serious?  You would rather have a child that as a previous therapist put it, manipulates others for attention than have a child that misreads social cues due to a having a brain that is wired differently? 

   She is not a victim of autism. She is an asshole.  She is the new Alison Singer.

   Holly is not a victim of autism, she is a victim of her parents failures.  And also of a society that blames her and autism as an excuse for her parents shortcomings.  Everyone is perfect in this whitewashed illusion we live in, unless you are different.  Then you are a living, breathing excuse for everyone elses problems.   

   Nobody is perfect. You don't always get what you think you deserve for all of the good you think you do.  You can love and support those around you to make the best of it.  Or you can be a whiny privileged coward, or a hate mongering ableist.

  The headline is wrong.  The story is not about autism.  It should be "Privileged Welsh family shattered by real life".  Get it straight.

Friday, April 5, 2013

The Autistic Truman Show

  I often browse YouTube for videos pertaining to Aspergers and Autism.  I do this to the point that at least one or two of the videos that are tagged as "Recommended for You" are related to Autism.  Curiosity gets the better of me sometimes and I watch them.  Occasionally they are good, like this.

  More often I get links to pure crap, like the Autism Speaks channel or something having to do with Simon Baron-Cohen and his male-brain theory, which I have past commented on here

  Most disturbingly of all, I will see a thumbnail of a small child, and the word Autism in the video title.  I know what it is.  Sadly, it's another episode of the Autistic Truman Show, starring an unfortunate child that does not know that his life is being shared with the global public for "educational purposes".

  For those that don't get my metaphor here.  The Truman Show is a movie about a man whose life is being recorded for a reality TV show, except he is not aware of it.

  I am not going to share any links to these videos.  I respect the privacy of these children much more than the parents posting them apparantly.  I am going to describe the offensive content I have seen in the videos and comment boxes.

  One of the first of these I have seen had a boy about 30 months old playing alone in a playground.  The video poster explains that the video was taken weeks before his diagnosis.  Very somber music is played in the background as he plays alone.  The uploader comments instructs the viewer to watch the video at the end for signs of stimming.   At least the uploader did not identify the name of her child. 

 One uploader shared a video of a toddlers birthday party, and invites the viewer to play a game of "which one of these is not like the other" when she challenges you to identify her Autistic daughter from the other children.

  A series of videos exploits a child growing up from ages 2-5.  It starts with the child happily dancing and twirling as he discovers a dishwasher, and covers his math interests through school.  The parent repeatedly questions the child in one video as to why he is counting, which after several interruptions he replies "because I feel like it" (highlight of the series).  In another video, the parent calls to attention the child's unusual body movements.  He is doing math in Spanish on an educational toy.  He flaps and rocks excitedly as he gets the answers right.  The point of the video, according to the uploader is to bring to attention the signs of autism to other parents so that they may get their children in therapy and diet modification if they show these signs.  Not that a child of age 5 is showing extreme enthusiasm towards learning and has advanced skills for his age.

  The sickest one I saw was one of a 2 year old girl building towers with blocks.  The parent knocks her tower over purposefully to incite a meltdown.  There are a lot of videos of kids having a meltdown, incited or otherwise.  Do yourself a favor and don't watch them.

  Commentary in the videos varies of sympathy for the poster and gaslighting, with a good deal of trolling thrown in for good measure.  NT parents often discuss exchanging videos of their own child with the poster of the diagnosed child, seeking their advice for a diagnosis.

   Someday these children are going to discover that they were involuntary social media stars, and their life, their play and their meltdowns were submitted to the worldwide public for a case study performed by Soccer Mom M.D.  They are going to figure out that they are a tool for soliciting public sympathy and empathy by their parents.  They are going to have further proof that both the real world and the internet views them as an "other", and most sadly their own parents if they have not already.

  Your Autistic child deserves the same privacy that everyone deserves.  Especially in the most intimate location, their home and from the most trusted people, their parents.  They are people, not living Public Service Announcements.       

Tuesday, April 2, 2013

Humanity 101: AS and the free market

Trigger Warnings: Autism Speaks

   Back about a week ago on The Caffeinated Autistic there was a debate in the comments section over whether AS and its negative rhetoric was responsible for discrimination and hate crime against Autistics in on this post (which is a rather excellent post).  You can scroll down to read the debate.  I typed up a rather satirical reply towards the end of the debate.  I decided not to post it at that time though, especially on someone elses blog in the wee hours of the morning.  Its a bit rough.  At that time it was rougher than it is now even.  I pasted it over here and waited until April Fears Day.  It sums up what is wrong with this organization.

   Humanity 101: Sensationalism sells.  I get that.  In order to do the charitable and merciful works that AS does they have to raise funds.  One raises funds by being sensationalist and controversial.  AS should be forgiven for their exploitative fund raising videos because the ends justify the means.  Mistakes in marketing strategy happen in a free market economy.  AS makes a name for themselves riding the wave of their "autistic tsunami", tugging on the hearts of maligned caregivers and challenged educators looking for answers on how to teach people with a different neurotype from their own, raking in donations with which the take care of themselves (quite comfortably), invest a large part into keeping their machine running with more fundraising campaigns, then funnel the rest into research geared to ending autism.  Some of the methods they research may be medically valid, some may not.  Some internet bloggers get angry with the ableist portrayal in the videos and raise a stink.  It gets bad press so AS pulls the videos.  It gets bad press because the internet bloggers make sensationalist complaints.  That's humanity 101.  Mistakes happen in a free market society.  AS is a charitable organization, they mean well therefore they are well.  The ends justify the means in a free market society.  The videos have been pulled.  No penance required in our Nation under God.  AS does good.  They have smiling little kids lounging on beanie bags on their facebook wall, and 1 million caregivers clicked like.  It is a positive place.  They are a charitable organization, they do good.  They are good, even when they do things that are not good because in a free market society, the ends justify the means.  Again, the ends (raising cash to support themselves and their effort to cure the autism epidemic) justify the means (exploiting millions of autistics, spreading life threatening rhetoric and restricting our right to life, liberty and the pursuit of happiness). 

Did I pass Humanity 101?

Monday, April 1, 2013

How it came to this, Autism Speaks

  Trigger Warnings: Autism Speaks, Autism Every Day video

    As I gathered information about autism on the internet, I came across many divergent opinions and theories from people on the web, both with and without Autism.  Some saying I should be fixed, some saying I should love and accept myself and be happy, and some saying I need to fight.

  Amongst those with autism, having similar lives, feelings and experiences as mine there is much disagreement and debate.  However I noticed one unifying theme:

 Autism Speaks sucks

  I am not one to jump on a bandwagon, so I did not take up the fight against this organization immediately.  However due to the criticism from my Autistic peers that have more knowledge and experience, I dismissed them as a source of reliable information.

  One of the standout reasons for outrage was a video called "Autism Every Day", in which I was informed a neurotypical mom discussed her urge to kill herself and her Autistic child, and did so in front of her child.  I decided to spare myself this sight and take my spoons and research elsewhere.

  I started blogging under the "be happy" philosophy of the three I above listed.  I was (and still am) deeply in self discovery mode.  I read other blogs.  I liked the activist ones.  I felt empathy.  I wanted to get involved, but wasn't sure how, or if I was welcome.

  ASAN's view "Nothing about us without us" is logical.  Why shouldn't people represent themselves?  I made a donation.  I bought "Loud Hands".  I cried

  I learned about the "Autistic People Should" and "Autistic People Are" flash blogs from Yes, That Too.  I decided that was a good place for me to step in.  I was late with my entry because I had no idea what I was doing.

   I was disgusted by that autosearch.  I revealed my self diagnosis to NT friends.  I linked texted them to check that autosearch.  I linked Yes, That Too to them.  They told me not to get involved.  I linked Radical Neurodivergence Speaking to them.  I have not heard from them since.

  I had always been "other", but I had always tried not to be.  When I made it clear that I was no longer interested in contorting myself into one of "them", I became less than other.  "They" do not want me to exist.  People I have laughed and cried with even had a fling with turned their back on me for simply admitting that I had a different brain type.  They erased me. 

  I realized I was in a fight, and my options were to press on, or return whence I came.  Forget this blogging thing, forget activism, forget autism.  Go back to living in the shadows, pretending to be what people wanted me to be.

  I won't lie.  I have considered option B.  I have questioned myself and why I am getting involved.  As Tolkien wrote, "It's dangerous business, going out your door".  It is easy to be a coward.  It kills you, but it is easy.

  The flash blog was a success.  Google vowed to fix the autosearch.  I felt great for a minute.  Then Autism Speaks erased me again.

  They posted a story about the autocorrect on their Facebook wall on 2/28 but gave no credit to the activists.  A lot of Autistic people worked a lot harder than I did on that project.  (Story was updated on 3/6 after a week of protesting)

 For me, it was validation of the belief.  The theory became law:

  Autism Speaks sucks

  I watched that atrocity "Autism Every Day".  I was prepared for Alison Singer's filicidal fantasies.  I was not prepared for the dozens of other ways that video would make me want to vomit.  I was not prepared to listen to an overprivileged mom lamenting the loss of her morning bagel dates because of her autistic child.  I was not prepared for the amount of fearmongering I would witness.  I was not prepared to watch people exploit their children for charitable donations.

  Mothers in a video saying they need help because of their child's autism, they can't socalize because of their child's autism, they can't hold a job because of their child's autism.  And dong this for a charity that provides next to no help (4% of their budget) for families with Autistic children, but provides plenty of rhetoric for hating Autistic children. 

  Yes, you are a sham.

  You could have gotten the support of someone like me.  A guy with a job that hes overqualified for.  A guy looking for support and answers.  A smart guy that doesn't quite get it in social settings.  A guy that is into weird things.  A guy with odd physical gestures.  A guy that is tough enough to survive in a world that does not want him to survive.  A guy with a voice, who is going to use it now against you.

   This is my first Autism Awareness Acceptance Month.  The only thing I'm going to be lighting up this month is your hot bullshit, and it doesn't burn blue.  Trust me.    

I selected this post to be featured on my blog’s page at Blog Nation.




Thursday, March 28, 2013

Neurotypical Echolalia

She teaches "special needs" children.

It is hard work, to teach children with "special needs" she tells me. She says it is rewarding to help the ones with special needs, but the expression on her face does not support that. I know joy when I see it.

She wants more of the night lights. The large, round, dim ones. She said they like them. They...with "special needs".  They like to play with them.   We only have one to sell. Not enough for all the children that want them. The "special needs" children.

She mentioned her work with the "special needs" children at least 4 times in this uninitiated conversation. Most people that work with the disabled feel the need to repeat it. Perhaps it's neurotypical echolalia. Perhaps she needs to feel validation. She, the only one without "special needs".

Sunday, March 24, 2013

Art of Internal Gaslighting

Trigger Warnings: Extreme gaslighting, autism, abuse, bullying, unpleasant medical problems

I am smart, and I could do great things if only I had common sense.  So I've been told.  

Absent Minded Professor, Idiot Savant, Rain Man.  I've heard all of that.

I am a jerk.  I don't socialize much.  That is my fault.  If I would try I would find it easy just like everyone else.  But I don't try.  I choose not to, my choice, my failing.  Its because I'm a jerk. 

I am clumsy.  That is because I didn't play with other kids.  If I went out and played baseball I would learn to catch it.  If I would keep my eye on the fucking ball I would hit it and you wouldn't have to give up.  If I wanted to make those free throws, I could.  I wouldn't lose my balance if I would stand still.  If only I got off my fat ass.  If I did some push ups I could climb that rope.  If I lost weight I wouldn't tip my bike over.

I am a hypochondriac.  I overreact to minor illnesses and make things up.  Its my excuse to fail, which I have openly chose to do from birth.  I have been sick approximately zero times in my childhood.  If..  if, by some off chance I really was sick it was minor and I should have sucked it up.

I am a wimp, or sissy or wuss or any other ableist, sexist or homophobic slur you want to toss at me.  I get anxious in social encounters because I am a wimp.  I sweat profusely when it is over 70 degrees because I am a wimp.  I gag on food because I am a wimp, ( and also because I am a jerk for not eating something that someone made for me).  When mom died, you shamed me for seeing a counselor because I was a wimp.  I jump at loud sounds because I am cowardly wimp.

I am forgetful.  When I forget something relating to someone it is personal.  I personally choose to do it because I am a jerk.  If I forget to do something I was supposed to do, its because I am lazy. 

I am lazy.  If I would use my intelligence, my gift buried under my landfill of self created shortcomings, I would still be ok.  But I don't, therefore I am not.

I am naive.  You moved me away from the city, because I was too naive to go to school here.  I "would not have survived with the street kids".  Too trusting, too gullible.  If only I would wisen up and pay attention. .

I am an astute learner, and having mastered this craft, the art of gaslighting, I set forth into this world on my own at the age of 18 with hypocritical disdain not only for myself  but the world around me.  I saw my shortcomings and those of others as voluntary.

I tried to become a party animal in college.  I had many meltdowns, which I was able to pass off by claiming I had drank more beer than I really had, or claiming I had a massive hangover from all of the beer the night before.  I told myself I was just immature from lack of socializing.  I would figure it out.

I became depressed my second year.  I isolated myself, and mostly only attended quizzes and exams.  I passed the courses using only the books and the syllabus.  I actually got through that year, but this strategy began to fail me in my 3rd year as I began to fail showing up for even the mandatory.  I viewed this as personal failure.  I turned to no one for help because I didn't believe I needed it.

I also failed to keep up with my financial aid and ran out of money, so I had to quit.  I told my friends I was taking a semester off then never spoke to them again.  Told myself I would go back someday.  Told myself I did it because I was lazy.

I didn't dare ask for help at home.  I was grateful my family tolerated me.  I felt that they tolerated me out of loyalty to my deceased mother.  I felt that I reminded them of my abusive father (I am named after him).  They told me so on occasion.  I kind of look like a much taller version of him too.  If they loved me, they did it despite the fact that I was an immature, naive, lazy, forgetful, clumsy, wimpy idiot savant with an antisocial personality  (Their words which became mine).   Upon learning that I was not going to attend college next semester, they threw me out.

I survived in direct defiance of my supposed naivety.  Made it to the age of 27.  By this point I was starting to isolate myself again as I had 7 years before.  I felt sick and had crippling anxiety every day.  I quit my job, cut off my friends and lived off saved money for 6 months, doing nothing but playing Warcraft.  After washing those funds up, I moved out west into the home of my guild leader that had invited me to move out there.

I figured that I would finally learn to socialize out there and build a new life as far away as possible from the one I was currently living.  The social anxieties I experienced from college soon returned.  As did the workplace anxiety I was experiencing as I searched for and bounced around a few menial jobs.

I also began to feel increasingly weak and short of breath every day, as well as a lot of leg pain.  I chalked it up to being out of shape, anxious and not acclimated to the new climate.  It became more and more extreme, as I struggled to walk moderate distances, then walk up hills, then get out of bed and get dressed.  Yet I still pressed on because I did not want to be anymore of a disappointment than I already was.  And also, by nature, I was a wimp and a hypochondriac, it was probably a molehill that my weak mind contorted into the planet Jupiter.  

I learned I had a pulmonary embolism, generated from a Deep Vein Thrombosis (technical word for big blood clot)in my left leg that I likely occurred from my trip to California (I took the scenic bus route).  I learned this after taking myself to the emergency room.  I accepted that I could possibly be sick when I no longer had the strength to make the 20 foot walk to my bathroom  (I had to crawl), and that condition did not alleviate for over a week. I was told by doctors that I had lost 80% of my breathing capacity and odds of me not surviving another night were 66%. 

It was my fault of course.  A nurse even told me so.  I made poor lifestyle choices.  I was fat, and I play video games.  I was not a hypochondriac this time, but I was lazy.  And I got what I deserved.  I got what I asked for out of life.  I didn't need the nurse to tell me that, I already believed it.  I didn't need my family to tell me that either, I had proven it.

I had to return home, to the place I was cast out of 7 years previously for being too lazy and a weakling because I was too lazy and a weakling.  At this point, I am not sure who emotionally tormented me more, myself or them.  The opposite of being a wimp is being strong, so thats what I had to be.

I tolerated the pain of walking.  My left leg was permanently damaged from the clot.  It swells easily, and I get pressure sores.  Sores that grow and grow and grow when untreated.  I had to take 2 weeks off a few years ago to let it heal a bit after it got infected.  I saw the doctor a few times, found out where I could buy the medicated bandages he used, then began self treating it and went back to work.

I only took OTC painkillers for this, because I saw a prescription as a sign of weakness.  A few days after I transferred to a new store closer to where I currently live, a sore broke open and I lost about a half pint of blood.  Ambulanced off to the ER, I was kept in the hospital for 3 days, where my clotting and circulatory problems were Exhibit A for interns and med students who saw no problem in poking my wound at 4:30 am.  Upon release I vowed to keep my bandage tighter so it would not happen again and went back to work the next day.

In addition to a 50+ hour work week, I took up weightlifting and distance running in this condition, in part to fix myself.  A girlfriend broke up with me because I did not have the energy to keep up with her physically.  I got strong, I got in shape and I shredded my leg to pieces.  The skin had peeled off of about 40 percent of my lower left leg between my knee and foot, and off most of my ankle.  The pain was no longer hideable.  I took 2 weeks vacation to heal, but did not get signficantly better.  I worked another month before I was directed by my boss to take medical leave.

At this point I was of the belief that I was going to lose the leg, and that did not frighten me.  At least I would be visibly disabled.  At least no one could look at me in a wheelchair or on crutches and say  "He's just a lazy ass crybaby".  At least I could say I lost my leg being tough.  At least I could say, I am a typical person doing typical things in life and I had the scars to prove it (to myself).

The practitioner that treated me called my recovery a "Christmas Miracle" 10 weeks later.  Unfortunately from being sedentary for 10 weeks, I noticed a familiar stiffness and shortness of breath the day I had the bandages removed for the final time.  They said it was probably just a cold but I should have it checked out.  I was supposed to return to work the next day so I was stressed  It was in fact the beginnings of another pulmonary embolism.  Nowhere near life threatening because I reacted early this time.

This is how the bullies, the abusers, the gaslighters and the haters win.  They don't have to spend their lives abusing you, you will do it to yourself far more efficiently.  The people who taught me how to hate myself are either long gone from my life, or I keep a safe distance from them. 

They don't tell you "You are this is what you are, be proud".  They tell you "You are different....become same or die!".  Even now, I wonder.  Am I autistic, or am I making an excuse for not being same?

Sunday, March 17, 2013

To the two tools making fun of me on Mamaroneck Ave yesterday

   Trigger Warning: Bullying, Strong Language


    Gee I've never heard that one before!  They used to call me lurch in high school.  That was before I went out for football and started lifting weights (funny how a little muscle tone exponentially decreases peoples urge to bully you).  That was before I was aware of how awkward my posture, gait and walk were.

   In the world of gainful employment, I have learned to control my movements in public somewhat,  to be conscious of my back being straight and my feet pointing forward.  However, on the 6th day of a 5 day work week, when I have 4 hours of stuff to get done and 3 hours left to do it, I stop giving 2 shits if someone thinks I move like a .......

   Exhausted, at the end of a break I was rushing to get an extra large coffee, contemplating not my mannerisms, but an espresso shot.  I hear what I have heard a thousand times before.  I know they're talking about me.

   "Derp..dee...derp", "Derp..dee...derp", "Derp..dee...derp"

   I have never seen these two persons before.  Male fantasizing ensues.  I want to kick the ever loving crap out of them.  Or at least confront them.  But I have a job, I don't have a criminal record, and I don't have time.  I open the door to the coffee shop.  Then I promptly close it.  They have 1 worker and the crowd at the counter fills the store.  I would not have fit in the building. I decide to head back and settle on a Red Bull.

   "Awfully crowded in there"  one of them says to me in an infantile tone.  I know when I am being patronized.

   "Yeah".  I reply and start walking back towards work.  Even when dealing with people I don't like, I am programmed to act with a certain level of civility.  I work in retail after all.

    I hear their whispers and giggles as I walk away.  Then a lady I did not recognize (but wish I did, she was quite attractive) called me by name and said hi.

   I responded and asked her how she was, all this time having no idea who she is but being quite happy to see her.  She was about to go into a movie theater and saw me moving quickly, so the small talk was short and sweet.  The way I like it. I noticed that the snickering of the two fools standing on the sidewalk behind me had ceased.  

   And thus ends the cliched feel good story of week of the socially awkward Autistic nerdy guy becoming cool and his bullies being taught a lesson when accepted publically by a pretty woman he can't remember.  (FYI I never dated her.  My face blindness isn't THAT bad).  

  Or not. This shit really pisses me off.  I wasn't joking when I said my first reaction was to clobber these two clowns.  The timely acknowledgement of that woman made me feel relief for a brief second.  This brings back memories upon memories of being teased, bullied and rejected until I decided to stop accepting that.

    I am at least 8 inches taller, and in much better shape than both of them.  I might be slightly younger too.  Also they were smoking, and I doubt late 30 something smokers started smoking last week.  They didn't appear to have spent any intimate time with a bar of soap recently either.  My point being that these two jackasses are not anyone to be mocking me or anyone else, and if they wanted to take it further...well it would hurt them a hell of a lot more than it would hurt me.  

   I did not pulverise or confront these two because I was on work time and it is not worth it.  I cannot fight every battle that comes my way.  I do not have the spoons for it.  No human, autistic or NT does.  I cannot lash out everytime myself or someone like me is mistreated because the fight would never fucking end.


The Forgotten Fire

   Type "New Rochelle" into Google.  A lot of people have been talking about New Rochelle lately.

   There was a ridiculous buzzer beating shot made by the boys basketball team in sectional playoffs.  You may have seen it on SportsCenter and featured on the front page of ESPN last week.  Its all over YouTube too.  The team is still alive in states and has advanced to the semifinals. 

   Super Bowl Champion Ray Rice is also from New Rochelle, New York.  There was a parade held for him here recently.

   Iona, a small college situated on the northern end of the city qualified for its 2nd straight NCAA tournament.  They're hoping they don't blow another 30 point lead in their opening game. 

   There is a lot of small town style civic pride going on in this normally nondescript suburb of New York City.  A city that pushes a population of 100,000.  Middle class homes and apartments to the south, a diverse urban heart that can't really be differentiated from the nearby Bronx and properties with 7 figure values to the North.  Express trains that run every 15 minutes during the day get you into the heart of Manhattan in 20 minutes.  A happy suburban utopia with something for everyone, right?

  Back in January of this year there was a fire at New Rochelle High School.  During the evacuation, two students who use wheelchairs were left on the 3rd floor of the building for at least 20 minutes while the building was evacuated and cleared by emergency responders.  Enraged parents rightfully complained to the Justice Department, and an investigation is under way.

   Reports of this incident "broke" during the fourth week of February.  I use quotations because this story is conveniently shuffled amongst the media celebrations.  I live in this city.  I watch the local channel 12 news often enough and I heard nothing of this.  I asked a few parents of some kids in the school that I know (not exactly a statistically significant survey)if they heard anything about kids in wheelchairs left in the school.  The parents did not know.  One parent called her son and asked him.  He did not know.  My point here is that this story isn't exactly trending.

   Here is a report from local news that came out 2 days before the above posted NBC NY story that is much more sympathetic to the New Rochelle School District.  It states that according to NRHS, the Fire Dept. knew of the location of the disabled children and advised the school to move them to their position, a direct contradiction to what the father of Jennifer Feltenstein told NBC.  Both sources agree that her father objected to her having classes on the 3rd floor, where there is no escape route from the building that does not involve stairs.  An "advocacy" group in Westchester County gave support to NRHS, agreeing that the school was right to follow the (disputed)judgement of the Fire Dept and keep Jennifer put.  (If you have a group of folks that requires civil advocacy because its not being treated as equal in society, and you have a complaint, and you back down from that complaint because an agency of the government of the society oppressing you says "its fine!"'re not a very good advocate)

   I have a lot of issues here.  First and foremost, if it is deemed necessary to evacuate 3000 students from a building from a threat posed by burning wires, how is it that two students in wheelchairs on the highest floor of the building are in less danger and don't need to be removed?  I didn't know there was middle ground in an order to evacuate a building being threatened by fire. 

   Feltenstein's father, Rich tells NBC that the faculty is not trained in using the evacuation wheelchairs.  When I went to school there was a little thing called a fire drill.  They happened several times a year.  Everybody is supposed to do some nifty role playing in a fire drill.  Wouldn't part of making pretend there was a fire and evacuating the building in an orderly fashion also involve getting physically disabled students into evacuation wheelchairs and getting them out of the building as well?  How can they have no experience evacuating students in wheelchairs?

   The concept of "safe rooms" defies all common logic as well.  If the school is on fire what room is safe? ......Really?  safe room?  Did Miss Cleo divine with a tadpole and develop this strategy?

   An aide and a security guard kept Jennifer company on the 3rd floor during the fire.  It must be of great comfort for her to know that should she perish in flames, an aide and security guard will perish with her.  Could the aide and security guard have been.......I don't know.........maybe... maaaaaybe trained in evacuating her?

   Mr. Feltenstein complains about Jennifer having classes on the 3rd floor.  I don't agree with that.  Faculty on the 3rd floor should be trained in evacuating physically disabled students.  She should have access to any class she wants to take in the presence of her able bodied peers.  Only if its a logistical impossibility to remove her from the 3rd floor should she not be up there.  Impossibility, not inconvenience or requiring effort on the part of a professional. 

   This whole situation reeks of deep social ableism.  The "safe room" strategy is after all a NY State mandate.  NRHS taught 3000 students on that day that the lives of the physically disabled are not worth the extra effort and teamwork to get them out of a building.  Media plasters inspirational stories of people running into burning buildings to get their pets and emergency responders rescuing kittens, but we leave humans in fires if its inconvenient to help them move.  When a disabled person loses their life, society will not question its self, it will blame the disability.

   Something for everyone in this suburban utopia.  If you're disabled then that something is silence, or your ass roasting on an open fire. 



Sunday, March 3, 2013

Of Empathy

Trigger Warnings: Aversive therapy, murder, very disturbing imagery in linked source video
   Throughout my self diagnosis journey, I have repeatedly encountered Prof. Simon Baron-Cohen and the Cambridge Autism Research Centre's (ARC)diagnostic tests and studies.  Many Autistics have a great deal of criticism of their work.  I found some of their tests myself to be rather inconclusive, flawed or just flat out bizarre.  Particularly their AQ test and CAM face reading test.

  The first link on their page takes you to a TEDx talk that Prof Baron-Cohen gave to British Parliament that was published on YouTube on 9/12/2012.  Entitled "The Erosion of Empathy" It instantly grabbed my attention.

   Autism is not the primary topic of the presentation, though he does make mention of it.  He discusses his beliefs on the causes of human cruelty and the seeming increase of it in society recently.  To summarize, he argues that the Good vs Evil paradigm is not scientific and therefore not valid.  He presents that human empathy is scientifically quantifiable and can be measured.  He says that social factors, genetic factors, and environmental factors can mitigate human empathy, leading to increased cruelty.

   He breaks down empathy into two components (1:33 of video).

Cognitive Empathy:  The ability to imagine someone elses thoughts and feelings (Theory of Mind)
Affective Empathy:  The drive to respond to Cognitive Empathy with an appropriate response.

   At 2:20 he presents us with his empathy "Bell Curve".  This is where I first started to question this talk.  It is a remarkably clean graph with perfect distribution in relation to empathy and population .  He rates empathy level between 0 and 6.  0 being low empathy and and 6 being high empathy.  The curve perfectly peaks at 3 empathy, where the median and mean both perfectly lie, snuggled together.

   Is empathy a statistic?  How does he rate an individuals empathy between 0 and 6?  With his AQ-10 test?  Why a scale of 0 to 6?  Should Wizards of the Coast include empathy as a rollable stat in the next edition of Advanced Dungeon & Dragons?  My Autistic halfling monk has 14 strength, 15 dexterity, 11 intelligence and 5 empathy.  I hope the DM gives me a +5 empathy enchanted ring so he behaves like a neurotypical in front of the King.  Sound ridiculous?  It should.  Role Playing games are fun, but real life does not even come close to functioning like one.

   At 3:00 the discussion of the "erosion of empathy" begins.  The first mitigating factor Prof Baron-Cohen presents is authority.  He says that an authority figure commanding or reassuring a subordinate tasked with doing something harmful to another human can mitigate the empathy that person feels.

   I find a sad irony in this, since ABA treatments designed to normalize Autistics that are endorsed by leading charities in the US (Autism Speaks) use aversives disturbingly similar to the electric shock example he uses.  Perhaps, since he is a leading global autism researcher, Prof Baron-Cohen can make presentations to these organizations and practitoners explaining to them that they are eroding their own empathy and the empathy of the human race in general with the treatments they use to force normalization on Autistic people that they judge as having little to no empathy.

    I also wonder, did the participants that delivered the shock not experience the empathy?  Or did they disregard it out of fear of the authority and the consequences or disobeying.  Were they not aware that it was morally incorrect to deliver the shock?  I believe that it is an erosion of courage, not an erosion of empathy that lead the participants to deliver the shock.
   He presents the second and third mitigating factors of empathy as Ideology and In Group-Out Group relations.  I believe that these two factors he has seperated are really the same factor.  For his ideology example he uses Al-qaeda and the 9/11 terror attacks and projects that the terrorists believed that their ideology was morally correct, therefore able to carry out their murders with a clean conscious.

   For In-Group-Out Group relations, he tells us of Rwandan ethnic cleansing.  One groups leadership spread propaganda against the minority, equating them as sub-human and therefore able to carry out the cleansing.  Very similar to the Holocaust.

   I say that this is the same factor because an ideology often carries with it the belief that those that don't share the ideology are the enemy and morally perverse.  The ideologists are the "In-Group" and the target is the "Out-Group".  Ideologists often use religious texts as their propaganda to excuse hate and death to the "Out-Group".

  I do agree with Prof. Baron-Cohen here.  Fanatical ideology and media propaganda can and do very much erode human empathy by portraying a group as sub human and morally lacking, suggesting that they are not worthy of empathy, or even worse, teaching that it actually good to kill or marginalize that group.  Empathy towards family and those in the "In-Group" would actually promote the abhorrent acts against the "Out-Group".  The actors operating on the belief that they are saving or defending the superior however endangered "In-Group".

   From 4:34, Prof Baron-Cohen explains the acts of serial killers and presents a comparison of psychopathy to autism.  He returns to the two components of empathy that started the talk.  He says that serial killers possess the "cognitive empathy" to understand, communicate with and seduce victims, but they lack "affective empathy".  They just don't care.  He presents Autistics as a polar opposite, saying that his studies conclude that Autistics lack the cognitive side of empathy, but when an emotion or experience of another is spelled out clearly (he used a piano lid crushing someones fingers as an example), Autistics display an abundance of "affective empathy".

   I am glad to see Prof. Baron-Cohen present to the legislature of one of the world's most powerful democracies that he has scientific proof that Autistics are not prone to kill.  He helps greatly in that regard.

   However his statistical quantification of a human emotion in an attempt to predict and explain behavior, and his labeling of empathy do no favors to Autistics.  Especially the term "cognitive empathy".  It is true that most Autistics do struggle to instinctively perceive non verbal cues.  However is this failure to understand really empathy?  A lack of humanity?  A lack of caring? It is not!  It is a struggle to understand a physical language.  A language that in many cases may never be natural, but can be learned in many cases.

  When an expert such as Prof. Baron-Cohen uses a term such as "cognitive empathy" he does not realize, how by his own theories he is creating real danger for Autistic people in the world.  Those who seek to keep Autistics as the "Out-Group" will make sure the statement "People with autism lack cognitive empathy" will be seen as "People with AUTISM LACK cognitive EMPATHY "in the public conversation.

   It would be positive if we called "affective empathy" what it is, which is simply "empathy", and identified "cognitive empathy" as the ability to recognize the emotional state of others based on non verbal cues.  Society should recognize that the lack of ability to read this language instinctively based on neurotype is not a personal failing, and give support to Autistics to help with that so they can exist in a 99% neurotypical world.   Society should realize that Autistic people do in fact have empathy and care about their fellow man and their communities as much as anyone,  even though those communities don't often care back.

   I think Prof. Baron-Cohen has done a lot of work that in the annals of scientific history will be seen as steps in the correct direction.  However he is trying to wrap all of his findings in a box, and do so now.  There is much more about the human brain and autism to learn than has been learned.  To turn emotional human behavior into a mathematical science with perfect shaped bell curves, graphs and even population distribution with predictable mitigating factors is a long way off, if ever possible.  His talk does not discuss the factors of free will and personal desire at all.
  Finally, do Autistics even lack "cognitive empathy"?  TheAnMish posted this video on her video blog where she discusses her experiences giving and receiving "cognitive empathy" with fellow Autistics on different levels of the spectrum.  She suggests that Autistics experience "cognitive empathy" with each other because they identify each others physical language. 

Saturday, March 2, 2013

Autistic People technicians

  I am a full time pharmacy technician.  I have held this job for 6 years.  I work sometimes up to 50 hours a week.  I interact with a lot of people, sometimes over 100 in a day.  It is not easy to deal with so many people in one day.
  It is not my first retail job.  Most of the jobs I had involved me dealing with the public.  I was not very good at it at first, which is likely why I did not keep those jobs.  I am not terribly comfortable with the public, but I manage.
   Out of desperation, over 10 years ago a friend got me a job at the electronics retailer he worked.  High pressure sales, you produce or get out.  Fortunately, he was a good friend and taught me things.  Fortunately the job had training videos.  I learned the value of small talk and eye contact (or in my case, feigning it).  I don't much like small talk, but it has much value to others.
   With a template on how to sell, which I followed with precision, I became an above average performer.  Nowhere near the best, but not in fear of my position.  I also suffered tremendous anxiety from that job.  I felt like I was forcing people to spend hard earned money on things they do not need.  Why spend money on things you don't need?  It troubled my sense of logic that I was there to convince people that they need things that they don't need.  I was ashamed of myself and I quit.
   The pharmacy is different.  People come in for things they do need, and its my job to help them get it.  I am much more at peace with that, so the socializing does not bother me as much. 
   Many of the skills I learned from the electronics job serve me well as a pharmacy employee.  Most of the people that come in are suffering, or caring for a loved one that is suffering.  Even if it is just for a maintenance drug, that prescription is a reminder to that person of their own mortality.  Eye contact, a soft smile and brief small talk off the topic of illness of medication makes the experience more pleasant for the patient.
   Most people are in a hurry to get out of the pharmacy, which makes the small talk brief and unstressful.  Occasionally you get a person that likes to talk.  My talk template runs dry in about 120 seconds, then I am in trouble.
   Having engaged in social pleasantries makes moments when a patient has a high unexpected copay or deductible or no insurance at all, and not expecting the cost less traumatizing for me,  I do not like to give people bad news, it causes me great stress.  If I am tired, especially at the end of my day I do sometimes forget my social pleasantries.  I look at the counter while I speak and do not make small talk.  This results in whatever problem that patient may have being taken out on me although I am not the cause of that persons discomfort.
   I wish interactions could be more brief.  The sooner I am done, the sooner that person gets to go home and take their medication, and the sooner I can get to work on the next one.  Less suffering for all that ends sooner, but for some reason that perfectly reasonable philosophy is lost on most.
   Social pleasantries help when dealing with call centers for insurance.  I have never worked at a call center, but they say it is an unpleasant job.  The turnover ratio is high.  I have a template for talking to them.  I try to guess where they are from by the accent.  Then I ask them how the weather there is.  Gets them on my side, which is good since they are essentially my enemy and working for a company that is being a jerk and not wanting to give medication that is making my patient feel better or possibly keeping them alive.
   I work in a small pharmacy.  Three people back there at most normally.  Sometimes managers and visitors come.  I don't like them in my workspace one bit.  Sometimes too many patients are in the pharmacy, with too many conversations that I hear all at once.  Sometimes my clothes are too itchy.  Sometimes the sun is too bright through the window.  Sometimes I tell my boss I have to go to the bathroom and I cool down in there.
  I like to touch the door to the storage room.  I keep my water and coffee over by that door on top of a half sized fridge, and it is cut off from view by a shelf of medicine.  People think I am going for a drink, but I am going to touch the door.  The door is cool and smooth and I like it.  I wiggle my toes inside of my work boots while I count pills.  I shift weight from one leg to the other while at the cash register.
   The store has had the same song list playing over the speakers for years.  I like to sing along until I am told to stop, which is often.  It has been brought to my attention that I cannot sing.  I don't dare dance....I have the grace of a groggy hippo.
   Sometimes patients die.  I have to go to the bathroom when I hear about it and hide.  Sometimes I cry,.  I do not let people see me cry, at home or at work.  Sometimes a friend or spouse of that person comes in to the store.  I don't know what to say.  I say "I'm sorry".  I wish I had something more profound to say but my mind does not give me words at those moments.
   I like what I do, I like to help people.  If I feel like I helped someone it makes the discomfort worth it.  Also dealing with the suffering keeps my own life in perspective..  People at work like me.  They know I am a weirdo but its ok.  We are all human..