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, Life....deal 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.    

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