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.