Friday, January 30, 2015

I am not a disease (8/25/14)

Today I finished reading accounts of parents that have kids with autism.  I was struck by how often the parents seemed to think their kids' lives were over.  Like "that's it, you've got autism" is "that's it, you got cancer" to them.  Your normal life is over, no chance at having any normal life anymore, everything is now autism-life.  This is perhaps understandable, given how little the average person knows about autism.

I, however, am feeling a little put out.  I am not a disease.  I'm not something to recoil over, to desperately throw cures at, to pity for existing.  Honestly, would you try to cure someone of African heritage of their beautiful darker skin?  Their genetics gave them that skin, mine gave me my brain.  I don't see the difference.  If either kid, African American or autistic, has trouble in school, you try to help them get through it.  You take into account their background and try to see how they see.  Live in their world a little, to help teach them to live in yours.  

I'm about to start a job that includes passing interaction with parents of very young autistic kids.  I hope my presence and existence can be some kind of reassurance, and maybe a learning experience.  Your kid's life is not over.  They can have a future right alongside all these neurotypical people.  

As for me... I don't want your pity.  I want a fair chance at the world.

Wednesday, January 28, 2015

Bonus blog entry: a study with brain scans and autism

http://arstechnica.com/science/2015/01/the-connections-in-autistic-brains-are-idiosyncratic-and-individualized/

A friend linked this to me, and it was sufficiently relevant to include here.  This may explain why the saying exists: "If you've met one person with autism, you've met one person with autism."  It's awfully hard to say how any given person is going to be affected by having autism, because the effects vary so widely.  This study compared the brain scans of adults on the autism spectrum with neurotypical/not yet diagnosed* adults.

The full article is, unfortunately, paywalled, but the summary itself is worth reading. 

Relatedly, if anyone wants to finance a few brain scans of my brain for science, I would be interested in getting them done.  It'd be nice to have an idea of what parts of my brain are connected better and worse than normal. 

* "Not yet diagnosed" is my favorite way to refer to neurotypical, or normally-developing humans.  As opposed to humans with autism or other pervasive developmental disorders.  Using this terminology rather than "normal" or neurotypical, acknowledges that just because you're not on the spectrum or don't have a diagnosis doesn't mean you can't have problems or eccentricities.  It also acknowledges that diagnostic criteria change as our understanding of human beings changes.  Finally, it acknowledges that there are a lot of undiagnosed people running around that could have a diagnosis but either can't afford the testing, don't realize there's something different about them, or do realize but don't care to formalize that knowledge. 

Tuesday, January 27, 2015

College diploma (and graduation) (8/27/14)


My college diploma*, which I had to unearth today for my job paperwork.  I guess they didn't even bother noting I achieved it in psychology.  I was extremely underwhelmed at the time I received this fancy piece of paper, and my feelings don't seem to have changed.  By the time the pomp and circumstance of the graduation ceremony arrived, I'd felt graduated and done for at least two months.

I walked with my class because my brother hadn't gotten to walk, thus (accidentally) depriving my parents of their chance to sit proudly in their seats and be very happy as their child crossed the stage to receive a fancy piece of paper from college.  So I sat through the enthusiasm and the preening and the strutting.  I got very annoyed with it all by halfway through the celebratory breakfast.  At which point, I took a bookmark that was part of our graduation packets, folded it up into a flag, and wrote "YAY" on it in sharpie.  Every time we were supposed to clap, I'd wave it, deadpan, rather than express any faked emotion or enthusiasm.
The sarcastic YAY flag

I should probably explain.  The value of an education is apparent to me.  I learned a great deal while in college, some of which I doubt I'd have learned elsewhere.  I made friends and I got a degree that tells people I subscribe to the system.  This is all very good.  It's the ceremony I hate.  By the time they got around to handing me my fancy piece of paper, I had all the knowledge required to graduate and more.  That knowledge was what I studied for, lost sleep over, took classes I didn't care about, and occasionally cursed my own existence over.  Once I had that knowledge, the ceremony was just a social construct for everyone else to be happy about.  Useless to me, save that it made my parents happy.  It did not, however, stop my father from saying, no more than half an hour after the ceremony: "So have you thought about going to grad school?"  Ah, parents...

As I put the fancy piece of paper away again, I have to muse that I still really don't care about the degree.  I'm more than a fancy piece of paper.  I guess we don't have a better way of shorthanding, "I'm a worthwhile person" than fancy pieces of paper.

*my middle name is blacked out because I don't like it that much and you don't really need to know it.