Pro-neurodiversity, pro-vaccines, pro-disability rights, anti-cure.

Now Katy doesn't want to live in Smithton anymore.

Tuesday, August 10, 2010

Notes from the 2nd-Floor Apartment Building

I'm a huge fan of Notes From the Underground.  The Underground Man has lots of issues and he's the opposite of perfect, but when I read Dostoevsky for the first time I felt a strange connection to this character.  I know what era it was written in and I know Dostoevsky had no experience with people like me, but I had to wonder if the Underground Man was like me.  If I could talk to him I know I would tell him that it's okay, that he doesn't have to change who he is in order to relate to other people, that there are other ways.  But if he ever existed, the Underground Man died decades before autism was ever understood.

I'm autistic.  My name is Kat or Kathryn, whichever you prefer.  I'm 21 years old.

Some people immediately want to know if I have a diagnosis.  I do and I don't.  I stopped before getting an actual diagnosis when I was in high school because I was afraid that I'd find out it was true.  I did not want to be autistic.  Now I don't see how an official diagnosis would be of any use to me, and my county does not have a way of diagnosing me since I hit age 18.  It doesn't count if I get diagnosed outside of my county.  However I'm seeing a cognitive behavioral therapist who is absolutely convinced I have autism--he prefers the term Asperger's syndrome but I don't think there's any difference between the two.  More on that later, I'm sure.

I don't like when people speculate on "how autistic" I am.  It's very rude.  You don't know me so you have no way of being able to tell if I'm less severely autistic than whoever you're trying to compare me to.  I am a person with autism and I don't see why I can't be respected for that, regardless of how severe or mild it is.  I'm verbal most of the time (extreme meltdowns being the only exception).  I don't like functioning labels because they're archaic and insulting to people who are considered to be on either "end" of the spectrum.

My life has changed over the past year and a half, a lot.  I was extremely lonely because I found out my last group of friends were using me and didn't care about me.  This happens every few years.  I had failed to find a relationship using any method, although a few guys on some online dating sites asked me if I wanted to be in a threesome with them.  Ew.  So I decided that as my situation didn't look like it was going to clean up any time soon, instead of sitting around moping I was going to do something with myself.

So I went back to the diagnosis I had refused to believe in three years before and typed it into Wikipedia.  I started there, for the first time with an open mind.  And now that I was able to admit that it was possible, it made sense.  Now I'm actually proud to tell people that I'm autistic.  When I look at myself back then I realize how silly and childish I was.  When I say silly and childish I mean stupid.  Because I was living my worst fears then, but now that I've done what I was scared to do my life has only become better.

In May I moved out of my parents' house and moved into my boyfriend's two-bedroom apartment in a bigger city.  It's amazing what kinds of things can happen when you accept yourself.  Everything has changed and that would have been terrifying before but now it's all welcome.  I managed to fumble my way through the awkward first stages of a relationship--I didn't even know I was in a relationship until he kissed me.  He thinks it's funny that I didn't know he was buying me dinner, taking me to movies and all of that because he wanted to date me.  Well I'm socially clueless but what can you do?  At least now I know why.  It's a good enough trade-off for being able to be intensely interested in things the way I am.  When I started telling people I had autism at the beginning of relationships it seemed to make it easier for them to understand my social awkwardness and all the other accompanying issues.  And strangely enough, I have friends now.  The kind who will carry several 80-pound loads of books into your apartment when you move and only ask for a cold beer in return.  I didn't realize embracing social awkwardness would make social awkwardness less of a problem, but I'm not complaining.

So now I live with my boyfriend, Sean, and our two cats, Echo and Tesla, who are running circles in the library as I speak.  Er...type.  The other day I realized I was an adult and that's okay.  It's not nearly as horrible as I thought it would be because it didn't mean I had to abandon everything from my childhood that was good.

I am pro-vaccine.  There is no scientific evidence that vaccines cause autism and I will not believe you if you say otherwise, no matter how many Age of Autism pseudoscience links you throw at me.  (A reputable study, on the other hand, I am willing to hear.  But there are no reputable studies that prove autism and vaccines are related.)  Wakefield was discredited because he was a bad scientist.  Jenny McCarthy is a porn star and the fact that she is capable of shooting a baby out of her uterus just like almost every other woman on the planet does not mean she knows anything about vaccines or autism.  I don't buy into this conspiracy theory that requires that absolutely everyone involved in the production of vaccines is purposely turning kids autistic, and no one at any point decided to report it.  It would have leaked by now; you can't have that many people participate in a secret and not let it get out.  Also, even if vaccines did cause autism, I would rather have autism than be dead from the measles.  If you'd rather your autistic kid be dead, I can't help you but I hope someone else does before you pull a Karen McCarron.

I do not think autism should be cured, even in the most severe cases.  If an individual with autism wants to be cured I am totally okay with that; that's up to them.  But there really aren't a lot of autistic adults around who say they wish they were cured.  A lot of the times the autism is less of a problem than society's reaction to autistic people.  And if your first reaction is to try to get rid of us by curing us, that's a problem.  We have a right to live how we choose, and a non-autistic life has no more inherent value than an autistic life.

I am an autistic person.  I don't mind using the word "autistic" as a descriptor for myself but I'm not going to go insane if you refer to me as "having autism" or being a "person with autism."  It really doesn't matter that much although I think that saying "I am autistic" is more precise than saying "I have autism."  I try to use the term "non-autistic" instead of "neurotypical" because my boyfriend gets really annoyed with how the term "NT" gets thrown around in the autistic community.  (He does not have autism and actually has very good social skills.)  It gets frustrating being a minority in a world dominated by autistic people, because people who aren't autistic don't think the same way that I do.  A lot of autistic people are starting to get so irritated that they make generalizations about "neurotypicals."  They say that neurotypicals are stupid, they're narrow-minded, they're boring, they're abusive.  I understand where they're coming from because I've totally been there before, but I don't think it's fair to use us vs. them language about a group of people who are neurologically different than us.  I'm more likely to be derisive when I'm using "neurotypical" as opposed to "non-autistic" and I don't think that's fair.  Also, there's some debate over whether someone with intellectual disabilities or mental illnesses can be considered "neurotypical."  It's more clear what you mean when you say the person doesn't have autism.

I don't wear blue on Autism Awareness Day.  What is awareness?  Wearing blue shirts doesn't help people with autism.  I don't know why people donate money to eugenic-minded organizations like Autism Speaks to "raise awareness" (which to them means have fancy parties with celebrities) when they could be raising money to help get services to autistic people who need them.  When you say you're raising awareness it's because you want to look like you're helping when you're actually not helping.  You get all the glory without putting out any effort, and you get to feel special when you haven't actually helped us.  If you "raise awareness" and help do useful things for autistic people I'm not talking about you.  Actually I'm not trying to attack anyone so much as get a point across.

Be warned: I get into comment wars.  It's not so much that I'm a nasty angry person as that it helps me blow off steam.  I like discussions and debates (as long as it's not "ALL AUTISTIC PEOPLE SHOULD BE CURED" or "HOW DARE YOU SAY MY SON'S TERRIBLE AFFLICTION WAS NOT CAUSED BY VACCINES."  Because yeah, you've been warned.  And those two stances are ones I can never respect.  As for the rest of you, my purely hypothetical audience, I look forward to meeting you and hearing from you and I hope we enjoy each others' company.


  1. The way I use it, "neurotypical" is not synonymous with "doesn't have autism." A non-autistic person might still not be neurotypical if they have something like ADHD, Tourette's, Down syndrome, epilepsy, synesthesia, dyslexia, bipolar, schizophrenia, etc. etc.

    "Neurotypical," on the other hand, just means "has no neurological, developmental or psychiatric disorders, learning disabilities, or anything else 'non-standard' going on with their brain." It's not a synonym for "superficial," "stupid," "narrow-minded," "conformist" or any of the other bad things overly-defensive Aspies use it to mean.

  2. When I was posting regularly on Wrong Planet I saw some people throw it around too much that way. A lot of times we tend to use that word when we're not familiar with the neurological makeup of the person we're speaking about. So I just find "non-autistic" to be more precise and I try not to use "neurotypical" so much anymore.

  3. Yeah, of late I've been using "non-autistic" more, and saving "neurotypical" for when I want to talk about people without neurological/developmental/psychiatric disabilities in general.

    (Example: if I'm describing a study with three groups --- an autistic experimental group, and two control groups, one having some other disability and the other not, say --- I might refer to the non-autistic, not-otherwise-disabled group as "neurotypical," but both of the non-autistic groups as "non-autistic." I like having both terms.

  4. Yeah, that makes more sense. It makes the meaning of what you're saying clearer that way.

  5. @ Kat,

    Hello, nice to meet you! I also waited for 3 years to get a Dx, even though I knew in my heart that I had Aspergers, within minutes of seeing Jerry Newport's segment on "60 Minutes" in '96. It took a big hassle with a Nurse who was visiting a patient of mine to force me to see a counselor, who arranged for an inexpensive testing for Dx.

    We're in agreement about everything, I'm adding you to my blogroll.

  6. Thanks, Clay! I've been reading your blog on my RSS feed for a few months, so it's nice to finally talk to you.