The Autism Speaks Stigma

It's a bit of a paradox as to why an organization that is supposed to profoundly help the autism community is looked down upon with scorn by other groups.  Autism Speaks is the most recognized organization for autism research and awareness.  Many a celebrity (I won't list all of them) has donated and appeared at benefits sponsored by Autism Speaks.  They have a tightly run organization, even with psychologists pointing out signs of behavior and new about autism activism that are linked to the main site.

Of course, there are many folks connected to the spectrum who have major issues with Autism Speaks.  The reasons behind this are that autism is looked at as a "regressive disease" per most language and events by the organization.  Many of those who are high-functioning believe that autism should be treated as a form of neurodiversity.  The videos produced in conjunction with Autism Speaks (look up "I Am Autism") are overblown and make it seem like autism is an end-all type of dysfunction.  They also employ psychologists but are rumored to have no employees actually on the spectrum to provide a crucial viewpoint that would be expected from most non-profit companies with this sort of specialty.

If the last paragraph was any indication, I'm among the latter group who does take issue with the campaigns of Autism Speaks.  There have been a couple moments where I ask myself why I do.  In my own observation, it seems like the focus of Autism Speaks is misunderstood yet not overblown.  My issue with them is that they put so much focus on those with low-functioning autism, which I can understand to a degree, but they appear ignorant to the fact that there are many autistics (meaning we the Aspies) who have blended in with society and have fine traits that would be lost if we were among the NTs.  I think it's a point that doesn't get driven home quite enough behind all of the name calling and protests of Autism Speaks.  I don't necessarily want to see Autism Speaks die a painful death, but I do not like the current way they operate and fail to take the perspectives of the entire spectrum into account.

I apologize for a lack of citations.  It is really meant to be a short opinion.  If there is more to post on this organization or others, which I'm sure there will be, I will have that when there is more time permitting.  It's been a busy Memorial Day weekend.  Cheers.

Expect the Unexpected

I know it's been six days since my last entry.  The wait for an entry may be that long depending on what's happening.  Most of the time you can expect 1-2 weekly blog entries.

I have had anger management issues over the years.  Doesn't mean I'm totally hostile, as for the most part I'm docile.  Problem is that I'm implosive.  It was not until meeting with a psychologist in college that I figured out that the chunk of the rationale behind my anger issues is simply one thing many AS folks don't take very well to: negative unpredictability.  When something happens that I totally don't see coming, I feel blindsided, and I react. This happens too often, as I often play out scenarios in my head and get stuck to them more than I should.

For instance, there was a time I took an exam in college and thought I did pretty good on it, thinking I scored 85-90.  Got it back and I only had a 73.  From there I went on to embarrass myself during the class, going on an attack of all the questions and trying to find every reason why it was wrong, asking hollow questions of "why" and "how" when the answers were in front of me.  I just thought I knew and didn't know that day, but refused to accept it as I already had in my head that I would score near the projected mark.  If I had thought there was a good chance I did badly, I would kick myself but I wouldn't have a mini-outburst like I did in that actual class environment.  The same result would happen after each of the two scenarios, where I would talk to the prof one-on-one about the exam and get tips on improving.  Thankfully, my professors didn't think I was totally psycho (or at least that's what they told me); they just thought I was somewhat intense.

Then there's the part of the unexpected that parents and psychologists focus on so much: the change in plans.  I can deal with these well enough when there is some flexibility expected or if I am only half-excited about something.  However, if I have a vision set up in my head, then there may be a problem.  Just a few weeks back, I was back in my hometown and went with my parents to see Avatar.  We didn't quite get to the theater in time to find three seats, and I had a conniption searching the theater desperately for three seats, because I expected that we would all sit together as a rule of thumb.  After the scare of embarrassment from the parents, I calmed down and took a seat on my own and let them sit together where two seats were available.  However, I was in a state where the impossible was happening, and I was willing to go through a tantrum to keep it from happening...which ultimately failed.  There is also the abrupt change in plans when I am excited and looking forward to something, which became a big sit down conversation with me for those who are close to me.  This is because they knew I likely would not deal with the news well unless it was totally explained to me.

Often I relegate my life to a script inside my head, with a little room for improvisation where I see fit.  Sometimes the scripts are long-term, other times just for a routine part of the day.  This leaves me for a lot of room to be disappointed, as I cannot control the actions of others (ultimately, nor should I).  I never actually wrote down about what I expected from life, except for those goals lists that all people end up doing at various points in the life cycle.  The problem I have with writing down goals are that I consider these goals to be realistic and concrete.  When it feels like the carpet is pulled out from under me, I feel totally screwed and go from this lovable sweetheart of a person to a rampant whiner, complete with baby rattle.  Now this isn't to say I do it often today, but it's a hard part to control.  I can get mad at the big events not happening as planned, or at the smallest white lie going awry.

The way I got around this was through psychology and a series of talks, but it's not something that will just go away, as pessimistic as that may sound.  It's really a matter of me learning to accept that when I play scenarios out in my head, they may not always happen.  Instead, I end up playing the best and worse case scenarios in my head in advance to help me out.  For example, I won't always get super confident that a girl will say yes to a date; I will picture what happens if she says she's got a man, if she is just afraid to let me down, or if she is going to jump back scared and then run into the night...this way I'll know it's coming and won't yell "I'm not trying to be creepy!"  Seriously, though, playing different 'scripts' in my head is the backup plan that I never implemented as a kid (I hated backup plans the same way I hated doing more than one rough draft to a paper).  It's also how I have managed to keep myself sane through the idea that a change can happen suddenly or that what I thought would surely take place did not.  Helps me to keep from that spontaneous combustion moment known as implosion.

A History of Introversion

The autistic is typically an introvert.  (S)he does not talk to people often, especially at large parties, and waits until the appropriate turn to speak.  The autistic is not known for having large circles of friends and can generally be reclusive.  There is generally a threat that comes from conversation, and when the autistic does become more outgoing, it is a frequent occurrence that it is the wrong thing at the wrong time.

Now that I got that National Geographic study intro over with, I will acknowledge that there's no exception here.  So maybe I can end my blog, or explain.  I am a guy with a lot of "friends" meaning that they are acquaintances I know from my college days, know from my high school days, or met at random or through a mutual friend.  However, there are very few that I call true friends...and even I can be afraid to talk to them from time to time.  That's really because my own introversion keeps me from letting people get close unless I choose the time.

Apparently I didn't speak that much when I was a child, as I preferred to stay inside my cocoon (house) with my parents and little brother, the three people I had a comfort zone with.  Thanks to this, mom would set me up for occasional play dates with the neighbors' kids or kids from the preschool camps.  Those broke me out of my shell, and I was especially encouraged to interact with the other kids in my K-1st classes.  I was in a special education unit those two years, as they were unsure how I would function amongst the other 'mainstream' students.  In the special education class I was free to act like me (for the most part) since other students were the same way.  In first grade, this one kid and I would 'plant a tree' right before the end of the day.  We would go to a different spot in the room and do the whole routine.  Sometimes we students would use words in the wrong context just because the word sounded cool but it didn't sound wrong, and I wasn't aware of the concept of being made fun of by others.  I just thought it was school and didn't know that this was anything odd.  That was, until I hit the second grade and was actively mainstreamed in with other students.

The only problem is that introversion became greater during these years.  Don't get me wrong, I made friends, but I was at my most obnoxiously extroverted during my years at Abraham Lincoln Elementary, where I would confuse the other students with some of my actions, talking about making fake movies and coming up with the most literal explanations for everything.  It was starting to hit me that not everyone cared about the crazy stuff that I talked about, and it caused me to hole up slightly.  I did it more so in middle school, as I wanted to be a 'cool kid' like anyone else, but I also didn't feel like I fit in with any certain crowd.  The 'nerds' were too into Pokemon for me, while I was nerdier than anyone, into obscure sports stats and the weekly movie configurations.

By high school I had drifted from some friends while staying close to others.  The interesting thing about high school was that I was definitely acting much more 'normal' than I did in my initial mainstream schooling but even more introverted.  I became very focused on trying to enhance my transcript for college and recognizing my introversion to the point that I turned this into a persona.  I wanted to be seen as enigmatic since I was a little weird, and fell into my own introversion.  So I was talking to people and making friends, but also letting introversion consume me because I was set on getting into the best college possible and 'shutting up the haters' at any cost.

College was probably the best time for me to break out of the shell.  Living in a dormitory and finding more "like-minded" folks involved in classes and programs essentially enforced connections with others.  Also, some of the stereotypes of classes of people further broke apart in college.  I also happened to view college as a fresh start, where I could

Fast forward to three years after graduation.  Since I live downtown in Philadelphia, I am around more people than I have ever been, which allows for some random interaction.  However, I prefer to keep to myself and blend in with the city most of the time.  That doesn't mean I haven't met people within networks, as I have actually become friends with a couple current and former coworkers, and even a couple of random acquaintances who share my interests.  It's really about making an effort to speak to others when I am comfortable, and other times I would just prefer to keep to myself.  I have comfort in my introversion, as I'm sure most spectrum people do.

How do I deal with my own inability to be outgoing?  I guess that's where things are different.  As mentioned, I still talk to myself a lot, and on occasion someone would hear me do this (particularly sharing an apartment with 4-6 others during my last three years of college).  I think even my neighbor upstairs can hear me from time to time.  My other alternative is to start going on and on concerning a subject when I visit a friend, but that can be an annoying habit...ask my parents, my ex-girlfriend, or any of my closest pals.  It's an easy way to talk to others when you have someone that might be able to answer you, compared to yourself.  However, there are some subjects that I write notes on or just talk to myself about, and I've learned to be okay with that.

Not all of us with AS are introverted at the same level, as some may be better or worse than others.  However, the amount of time we want to spent talking to others can evolve as we learn more about social mores and begin to apply them.  It will never be easy for me to break from my shell of shyness out of the fear of saying something totally off-color, but I'm comfortable enough in my own skin that I know when I can afford to speak.  Such as when I write a blog entry about talking to others!

The Intensity of Hobbies

Many of the experts of folks around those high-functioning along the spectrum know that there are so many true hobbies for people like me.  We have this intense interest in some 1-3 subject areas where we know minute details and could bore any average person for hours on the subject.  Well, that is true.  However, it's not like we don't follow anything else.  I have a passionate interest in my music collection...a very passionate interest.  It's alphabetized and fully cataloged via spreadsheet and on the rateyourmusic site. One of my worst habits is going past listening and into intense digital collecting.  I get the temptation to pay attention to what patterns of albums I have by an artist ("I can't own the second album since I need to have one artist where I just own the first and third albums") or sometimes want to be different ("I will make this the only album I like by this band just to say that I think their best one is overrated" which is something other hipster types do...yes, I admit to being somewhat of a hipster).  However, music  is something I love more so for sonic reasons, and it became a fixation as I grew up, even to the point that I have dabbled in composition.  Granted, it was worse when younger.  During my elementary school years I had a fascination with reading TV Guide.  I also used to keep track of the movie theater listings, including what two theaters could not show the same movies, and would come up with my own scenarios for fake movies.  Screw plots; I just wanted to picture the biggest blockbuster ever playing on the most screens.

There are smaller term interests of mine that most people would either find boring or just totally ridiculous.  I sometimes like to pay attention to school curricula, whether it be high school or college.  It's almost as if I want to build my own prestigious high school and choose what courses they would offer.  If I ever asked a friend about what AP classes he or she had as the topic came up in conversation, this was why.  I actually find that sort of information fascinating because of the patterns.  I also could go on about the history of distribution company logos, but I realize that no one is going to give a crap with the exception of people in a Yahoo group.  I'm cool with it, too.

One the other hand, I have interests that are common.  I am a guy, and I love sports.  I'm devoted to all the Philadelphia teams, and I especially pay attention to football, baseball, and basketball; difference is I sometimes analyze them differently than others do.  I have some interest in philosophy, politics, finance, and live plays.  It's not that I don't have the same hobbies as others...I have friends who share in my love of 'tortured intellectual' topics, sporting events, independent arts, and nerd culture.  It's just that many of us take these to extremes...I can rattle off enough NBA records to make your head spin.

Reality is that I cannot pinpoint why I get interested in the minute, beyond my remarks about patterns earlier.  I am very oriented towards hard numbers and sequences, which is why I get drawn to the interests that I mention above.  They all involve this sort of hard data.  Even music to me is about the sonic experience, as I will sometimes pay extra attention to chords.  However, a lot of that love is the same love of music as NT folks would have, so that's only so good an example.  It's essentially that I get caught up in some data that really amazes me, and then it translates to my own pretend world.

While I get consumed with my hobbies, sometimes more than I should, it's really because of the Aspie personality...getting fixed on the details of a couple interests in particular.  Now that I have shared some of my interests, I bet I have either inspired people to read on confused people...I'd put my money on both.

Since it's so gorgeous out, I have to focus on another occasional interest that is shared with everyone...the outdoors.

The Diagnosis

Way back when I was around six or seven, I thought of myself to just be some kid who ran in circles and played around in the backyard.  I enjoyed playing catch, eating ice cream, and watching Saturday morning cartoons.  However, some of the things I did were not like everyone else, as I knew TV guide listings at a young age and wrote down random words about TV shows within notebooks...well, I was starting to do that at the time.  Some people were saying that I was weird, and I didn't get it.  However, I finally started to sense that everyone else was acting different than I was.  So I had a talk with my mom at random that day, and she revealed to me that I had "something called autism."

From what I recall, my mind went through a trance, and it's not like my habits changed.  Early on, I accepted it, probably too much.  I figured I was just someone who was a little different than the others, but I had learned through those assemblies and programs that 'everyone is special' so of course I had to be as well.  However, all of the strengths of having high-functioning autism seemed more apparent as well, as my teachers had been told of this early on.  While I didn't receive special treatment once I was mainstreamed (I went to a special education class for K-1), what was better is that they knew I had a gift for long term memory, which I can explain in a later post.

I can't be sure how others on the spectrum took the news, but there might have been that same level of shock for many, depending on what age it was revealed.  I just know my story.  From that day forward, I more clearly found myself and adapted to what hand I was dealt.  As it became less of a disease and more of an adjustment, everything felt that much better.  Now it was all a matter of how I would slowly adapt to "normal" society...

The Mandatory Introduction

Hi there.  You found my blog.

Who am I?  My name is Chris Voss.  Some call me by my first name, others by my last.  My middle name is Walter, which is where my tag comes from.  I just began this blog out of a desire to learn more about the autism spectrum.  I was diagnosed with high-functioning autism at age four, viewed as having Asperger's Syndrome by the time I reached high school, and then I came public about my case during my college years.  Recently I've decided to try giving back to those who might be just "normal" enough to function with society, but just "different" enough to be seen as eccentric, or whatever word they use these days.  I noticed that many blogs come from parents of children or doctors, and those who are on the spectrum are publishing books.  However, I wanted to start a blog that would be more free-form in nature.  Over time I'll trick it out slightly.

My goal of this blog is to share some life experiences with the world.  They range everywhere between trivial everyday situations, the habits of the Aspie (well, at least this version), perspectives on the broad subjects that people are curious about, how others have reacted to my oddities, and some occasional news and opinion concerning the spectrum.  I will try hard not to deviate, as I have a personal blog for that.

Some experiences will be more interesting than others, and some topics may border on controversial.  When all is said and done, I hope you get as much out of reading each blog entry as I do writing them.