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

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

Friday, November 26, 2010

Teaching music and ASD

 A good friend of mine is in school for music education and does a lot of social justice work.  When I started doing the autism advocacy thing he was one of my strongest supporters.  Recently he had a class project where each group was given a disorder of some sort to study so they could discuss how to adjust teaching methods for students with disabilities.  His group chose autism.  He asked me if I could write a short letter about my experiences as a student with autism, and I've been meaning to share it with you guys.

This is what I wrote:

My experiences with ASD in the classroom weren’t all positive. I always did pretty well in school when I was young, but my odd behavior in the classroom got me in trouble. I was a social outcast and target for bullies from my very first encounter with preschool, and that had a big impact on how my teachers treated me, because I was seen as the problem. I was originally diagnosed with attention deficit, which I didn’t have, so my behavior was misunderstood.

I tend to get very focused on one thing and tune out everything else. This means that I will have trouble switching between subjects (this became easier when I got older and we walked from classroom to classroom, which gave a clearer transition between subjects). This also means I can have trouble concentrating because I’m thinking so hard about something else (not because I have difficulty concentrating in general). I sometimes missed out on class time because I’d finish my work in one subject and start reading a book, and I’d look up two hours later and realize everyone else had moved on to math and I hadn’t noticed.

What really struck me was how unsympathetic teachers can be. They’ll tell you they know you can do better. They’ll tell you you’re not trying hard enough, not motivated enough, need to try harder, need to pull yourself together, and none of that was working. They didn’t understand how hard I was trying, and even I didn’t understand what was going on with me, and it made me blame myself even more. When I was diagnosed (at around age 17) I was often told that I needed to just get over the autism, or that I was using it as an excuse. I talk to mothers who have autistic children and they say the same thing. Even when their children are diagnosed, it seems like they have these horrible stories about how the teachers said the child wasn’t trying hard enough. Children are expected to excel in every subject, every hour of every day, and that’s not possible for anyone. Two friends of mine have said that their kids’ teachers make the work easier for their kids and then wondered why they were still falling behind. Some teachers are really good but those stories stick out, and it really hurts me knowing that other children are going through what I did.

To music teachers, I’d say to be aware of the fact that not every child is going to excel in your subject. Autistic children may be average in music, or they may be far below or above average. Make no assumptions, ask questions of both the child and the child’s parents, and remember that just as no two children are the same, no two autistic children are the same. There is a huge amount of variation within the spectrum, with certain autistic people having very different strengths and weaknesses, and as the saying goes, “When you have met an autistic child, you have met one autistic child.” Even just a little bit of variation in the program can help an autistic child a great deal, and it will make a good impression on the child.

Saturday, November 20, 2010


I have some news that I really, really wanted to share during Autistics Speaking Day, but at the time I felt like it wasn't appropriate because I didn't have confirmation yet.  So here it is.

I am officially now a chapter leader for the Autistic Self Advocacy Network.  I'm going to be running the Greater St. Louis chapter.

Naturally, I am very excited about this.  I've been wanting to get involved with the ASAN for about a year and a half now, because I really like Ari Ne'eman and I really like the ASAN.  But it kind of seemed like this impossible dream and I used to become discouraged quite easily.  Since I saw what I did on Autistics Speaking Day, I realized I had a decent chance of accomplishing things if I put a lot of effort into it.  And I thought, why can't I do things like this all of the time?

I knew there was a possibility of the chapter starting when I was working on Autistics Speaking Day.  I knew I really wanted this to happen, but I was kind of scared at the same time.  I turned 22 on November 8th.  I'm young, I'm naive, and I can be kind of foolish sometimes.  In the past I've been kind of aggressive about my views and I'm not good at being diplomatic (although that's getting a lot better with age).  Most importantly, I had no experience with the organization and I had never tried to lead anything before.  And Autistics Speaking Day turned out to be incredibly difficult, more difficult than I'd expected, and I worried about putting myself through that again.  I was worried that I would not be capable and would not be successful.  I'm still a little worried about that.  But I don't want to give this up.  I've spent the past few years wanting to do something with myself, wanting to be useful or make a difference, and now I have an opportunity to actually get involved instead of reading about what other people are doing.

So now I'm trying to get a location to have a meeting and get people interested in going to the meetings.  I know I'm going to be really busy but I'm okay with that.  The thing is, I don't have a job.  I worked for my mother's medical transcription business once, and I was really good at that job, but when she lost clients and had to lay me off I never really found anything else.  I'm living with my fiance and he makes enough money that he can pay all the bills and still have extra money for us to do things.  I don't really need money.  I wanted something to do.  And the more I thought about it, I would rather do something useful and rewarding than try to get a retail or fast food job that I will hate.  And as nervous and anxious as I am over the uncertainty of what will happen, I've never been this happy before.  I have the opportunity to make a difference and run this chapter, and I know that I have the means where I can work on it.

I'm going to try my best to make the Greater St. Louis chapter successful, and I'll do whatever I can to help the ASAN achieve its goals.  Wish me luck.  :)

Contact me if you're in the St. Louis area and would be interested in going to our chapter meetings.

Monday, November 15, 2010

Another Murder

Trigger Warning:  Describes the abuse and murder of an autistic child.

I have no idea how to explain how angry and sad stories like this one make me feel.  Another mother has murdered her autistic child--this time by forcing him to swallow bleach.  As if it's not bad enough that she force-fed her kid poison that caused him to die of internal chemical burns, other autism mommies are on her side.  Didn't you know that it's just so hard raising an autistic kid?  It's so hard, in fact, that apparently we're to believe that it's understandable and even honorable to kill your own kid for no other reason than that the kid is autistic.

This phenomena isn't limited to autism.  Disabled children are murdered every day for similar reasons.  No one wants to blame the parents because they think they have it so hard.  So they vilify the condition, unable to comprehend that to vilify the condition in this way is to vilify the people who have the condition.  Since disabled people's lives are not considered valuable like "real" people's lives are, their pain and experiences are not considered when they are murdered by the people who claim to care for them (although mysteriously enough, abusing a disabled child, which is a far less serious crime than murder, is considered to be evil).  The parents and family of a disabled child are practically seen as saints by our society, and that often continues after the so-called saints have abused or murdered their child.  We see this happen over and over again, and no matter how many times we challenge this, the general public seems just as ignorant of the fact that murdering a disabled person is still murder, even if you're their parent, even if it's hard, even if you "don't get enough support."

I don't understand why killing someone for being disabled isn't a hate crime.  If you killed your son because he was gay and you didn't want him to be gay, it would be a hate crime.  If you killed your son because he was black and you didn't want him to be black, it would be a hate crime.  Punishment for killing disabled children often amounts to no more than a slap on the wrist--I remember a recent case that infuriated me where a woman killed her autistic daughter and was simply released after her trial.  She went on to tell reporters that she loved her daughter and hated autism, and that was why she'd killed her.  And groups like Autism Speaks aren't helping; they have used this kind of sentiment to attract money to themselves and their executives have even openly fantasized about killing their autistic children on tape.  In front of the children.

If you could accept that autism was so terrible that murdering an autistic child was a legitimate option, you would have to accept that the autistic children are to blame for their own condition and the apparent misery of their parents.  It pins the responsibility on the victim of the crime instead of the perpetrator, in this case an adult and a mother who should have been in control of her own actions.  She had been plotting to kill her son for years and she did it deliberately.  I'm assuming that the kid wasn't going to just happily swallow the bleach either.  Somewhere in the middle of fighting with him to drink it, watching his face get burned from where the bleach had spilled, she had to stop and think, "Maybe I should call an ambulance.  Maybe I should stop."  She called 999 for herself.  And I already know she probably had some mental health issues going on.  But her actions suggest that she would not meet the legal requirements for insanity (because she was aware that what she was doing was wrong), and her actions should not be excused.

I don't know why this is still okay, 20 years after the ADA was signed.  It's not okay to me, and it's not okay to a whole lot of other autistic people.  If you're a non-autistic person reading this, and you're not familiar with these concepts, please understand that autistic people do have feelings.  We can be hurt by comments like this, and more importantly, these comments shouldn't be made in the first place.  Any attempts to make the murderers of autistic children sympathetic is nothing more than apologism.  I want to see a future where language like this isn't used and ideas like that aren't spread, and then maybe autistic children will stop getting hurt.

Thursday, November 4, 2010

Reflections on Autistics Speaking Day

About two weeks ago I posted an open event on Facebook called "Autistics Speaking Day."  I was a bit pleased with myself for inviting so many people, but I realistically expected maybe 20 people to RSVP yes.  I remember thinking how cool it would be if I got the guest list up to 100.

Not only did it exceed  by expectations, but I got nearly 500 people RSVPing yes, and over 80 blogs participated.  I was exhausted trying to keep up with moderating the pages and responding to messages about it constantly.  I got to see my name written in newspapers in countries I've never been to, and people I respect a lot actually noticed what I did, and many of them even went on to thank me for  it.  That to me is incredible.

I don't want to sound like I think it's nothing because I worked my ass off trying to keep things going, but the success we had on Monday was not my doing.  Over 1500 people were invited to the event, and I only had about 400 in my Facebook friends list when we started.  Lots of people were inviting friends and posting links.

But this was all sort of lifechanging to me because at the same time as I realize that I didn't do anything too incredible, something I did that I thought of as insignificant wound up causing this huge explosion of productivity.  I am still trying to wrap my mind around that, because I'm so used to being ignored and being an outcast.  This wasn't what I had in mind when I decided I was going to try to help Corina post about ASDay (and by the way, I hadn't even talked to her before because I'd been a huge fan of her blog but friends like her seemed out of my league).  I am really glad it happened this way because I'd been having doubts about whether anything I ever tried to do would make a difference, and now I think that it can.  If enough people get ahold of an idea like Corina's, it can go to extraordinary places.  I am really happy that I was able to be a part of this, and it really has changed my life and the way I look at things.

I know a lot of you probably saw me posting on this and thought, "Who the hell is this chick?"  You'd probably never heard of me before late October of this year, and that's because I stayed quiet and out of the way.  I posted briefly on WrongPlanet but didn't keep up there, and that was under a pseudonym.  I'd sort of gotten involved with some of the Facebook groups for autism, but I was a fairly occasional poster.  So I wasn't putting myself out there a whole lot, but I've been watching you guys for a long time.  I've grown to care about a lot of you.  I just did it silently because I thought I had nothing much to add.  And then I did have something to add, and I made this blog, but I got embarrassed quickly from posting messages no one would ever read, so I didn't post between July and October. 

When everyone started interacting with me, because of my activity with the Facebook event, I was kind of shocked.  It was kind of like you guys had all been celebrities before and I was just the fan looking in from the outside, and all the sudden people wanted to talk to me.  And that was so awesome to me that it was almost like talking to movie stars.  At that point I became obsessed with my own involvement in things, the way I had become so obsessed with Victorian England and Egyptology, and it was all I did for several days.  I'm not going to lie, it  felt pretty awesome.  I suddenly had a soapbox to stand on and I was given the opportunity to pull other people up on the soapbox with me.

I didn't really have much of a chance to put my own thoughts out there because I was so focused on everything else I had to do.  I don't think my post probably got noticed for anything other than the huge freaking list of names of the participants.  It wasn't like it was spectacular, and I don't think I got that many people who were interested in my writing specifically.  That's probably good because praise tends to go to my head.  It also gave me a better opportunity to listen to what other people had to say, and they say it way better than I could.

I was really uncomfortable when I realized I wasn't going to agree with everyone who was participating.  I was afraid of curebies and antivaxers taking over.  I've seen a couple autistic people I liked get carried off by the organizations run by these people, and I was worried that I would be seen as a sell-out.  Then I realized that I couldn't silence any voices just because I disagreed with them--after all, I got into an argument with one blogger and I had decided that wasn't a good reason to exclude him before the argument was even started.  But the event was supposed to be about raising awareness and I realized that the people who I disagreed with were working towards that goal in this instance.  Where their goals are the same, not only am I obligated to work with them but it's the right thing to do.  It's not about being fake or giving up, because I'm still really strongly pro-vax and anti-cure, but the event wasn't being fought over those issues, and they weren't relevant.  The people I worried about surprised me a lot by posting some really positive things.  So we can disagree on other occasions but this wasn't the time or place for it.  I think it forced me to be more mature than I had been about it, but it was surprising to see that change happening without it otherwise influencing my opinions on vaccination or cures for autism.  That one day the message wasn't all about me.  It was about everyone, and letting everyone speak for themselves.

It seems like I might be good at this--or maybe I just got lucky and can use the contacts I've made to help me in the future.  What I'm saying is that I want to try to do this again.  Not just Autistics Speaking Day year 2. That's been decided already.  Honestly, I want to do more events, and more advocacy, maybe even in my own area.  I have seen what trying can do and it was way, way more than I anticipated, so I'm going to try again.  I'm only 21 and I sure as hell don't know everything, so I'm probably going to trip a lot on the way, but seeing this happen is going to make it a lot harder for me to just sit back and watch again. 

So...where do I start?

Monday, November 1, 2010

Autistics Speaking Day is today

This has been one of the most stressful, most exciting, and most rewarding weeks of my life.

I made my blog this summer when I was home alone all day and off school, and I thought I had something to say.  I didn't touch it for a few months, but when I decided to start getting involved, things just sort of fell into place.

It started with making a few friends on Blogspot.  I was happy to have a few people listening to what I had to say, and I didn't expect for many people to notice anything I had to say.

Then I was inspired to create a Facebook event for an event Corina had suggested.  Yesterday 365 people were participating.  Today I found there are over 450, plus people who don't have Facebook accounts who have e-mailed me their blog posts.

The support has been overwhelming, and I've made a lot of friends and a couple of enemies along the way.  I was obsessed with this event, staying up sleeplessly to moderate posts and disputes, trying to respond to each participant individually, getting together lists of participants and blog posts, keeping up with news posts on the subject...and it all paid off.  Today is already a success, and by my clock it's only 2:00 PM.

I'll spend today glued to my computer, trying to share as many stories with as many people as I can.  A lot of people have thanked me for what I'm doing, but I'm just a person who put a Facebook page up.  You have all made this possible, and you have helped bring Autistics Speaking Day to more people.  Thank you for helping me do this.  You are all amazing.  And this is really evidence of how important the Internet is to autistic people, and how foolish it would be to think that turning off Facebook would help non-autistic people understand what it's like to be us.  We're here today to use the Internet to tell non-autistic people who we are and what autism is.

Thank you and I hope you enjoy Autistics Speaking Day.  I'll be glued to my computer all day.  I'm sending out lists of blogs and participants.  If you want to write a post, send me a link and the name you want to use (your own or a pen name) so I can share it.  I'll update the list periodically through the day and I'll try to get to them all.

The participants:

1.  Action for Autism’s Mike Stanton explains why Communication Shutdown is offensive, and what it is like when autistic people shut down in real life.

2.  Alexander Cheezem writes an awesome open letter to Buzz Aldrin.

3.  Allecto on dispelling myths about autism.

4.  Alysia Krasnow Butler on her own son’s autism diagnosis and her friend’s son’s recent unexpected diagnosis.  A beautiful post.

5.  Amanda Forest Vivian on problems with the kinds of things non-autistics are trying to “fix” in autistic people.  This is really awesome and you should read it if you’re not familiar with the concepts of “ableism” and why it’s not necessary or even beneficial to “pass” for non-autistic.

6.  Ari Ne’eman from the Autistic Self-Advocacy Network on Communication Shutdown and Autistics Speaking Day.

7.  AS Parenting has an awesome article on autism (including nonverbal autism) and advocacy. 

8.  ASD Mommy-I don’t know this blogger’s name, but it is a good post.

9.  A.S.S.G.O. (AS Support Group Online)’s post for Autistics Speaking Day.

11.  Brigy Staples on the double standards people use with autistic people.

12.  Britt Kravets on social interaction and acceptance for the whole spectrum.

13.  Clay on Autistics Speaking Day; also contains Ari Ne’eman’s post.

14.  Codeman busting myths about autism.

15.  The Coffee Klatch on their Twitter event, which you should totally check out if you have Twitter. 

16.  Corabelle Li Crol on the power of the Internet and autistic people.

17.  Corina Becker’s guest blog on things she knows as an autistic person, and her post on her own blog for Autistics Speaking Day.

18.  Craig Thompson posted a video about autism and communication.

19.  Cripchick (Stacy Milbern) on the dangers of donating to non-profit autism organizations that are all about profit and do nothing for autistic people.

21.  Darcy Reed is an autistic writer who writes beautiful poetry.

26.  Estee Klar on the dangers of trying to normalize autistic people with medication.

27.  Gavin Bollard on why a day of silence doesn’t work.

28.  Gaynell on the harm that society has allowed to be done to autistic people, particularly on physical abuse and restraint.  This is an important issue in the community right now.

30.  Heather Sedlock on her autistic son’s life.

31.  Ian on his experiences with autism.
32.  Jennefer explains what she would like people to know about her three-year-old autistic son, referred to here as HRH.

33.  Jill with some general info on autism and ASDay.

34.  John Elder Robinson posts his support here.

35.  John Scot Thorburn on how autistic voices should be heard.

38.  Julian Edward Frost posts on his own experience with autism.

39.  Karen Baum writes her first blog post on Autistics Speaking Day, for which I am honored.

40.  Karin has written several posts for today, which can be viewed here:

41.  Kassiane on what she can tell you and explain about living with autism, and being on your autistic kid’s side. and
42.  Kathleen on autistic people and communication.

43.  Kathryn Bjornstad writes about Autistics Speaking Day and shares a list of participants.

44.  Kerry Cohen on her autistic son, who she has written a memoir about.

45.  Kevin Healey shares the voices of autistic people.

46.  Kim Wombles on supporting autistic people instead of shutting down.

47.  Leah Jane on how the Internet made it possible for her autism club to pull off a successful event. and on the aftermath of ASDay

49.  Luna Lightning on her own experiences with autism and life in general.

50.  Maddy Keene on her experience with autism/Asperger’s. 

51.  Matt Friedman explains how social media has helped him and why autistics must speak for themselves.

52.  Maya Brown-Zimmerman on battles with the early intervention system.

53.  Melissa Fields on not feeling welcome in the non-autistic world.

54.  Nicole Nicholson shares an awesome poem with us for Autistics Speaking Day.  She is also sharing other poems, so check them out.

55.  Ole Ferme L'Oeil on the wide range of people in the autism spectrum; also includes some awesome links to other important blog posts that you should check out.

56.  Pamela Harvey on the use of silence.

57.  Paula C. Durbin-Westby shares her e-mail to Buzz Aldrin about Communication Shutdown and Autistics Speaking Day. 

58.  Rachel Cohen-Rottenberg on empathy and communication.

59.  Sandy challenges the idea that verbal communication is the best form of communication.

61.  Savannah posts poems about her experiences with autism.

62.  Scottish Mum on why Communication Shutdown is not for her.

63.  Shanti writes about her life, selective mutism, and her obsessions.

64.  Shelly Valladolid on autistic special interests and their validity.  I don’t know a better way to put it; it’s a short but good post.

65. Socrates from the New Republic on Autistics Speaking Day.

66.  Stuart Duncan on breakdowns in communication.

67.  Sunday Stillwell writes an informative post on Autistics Speaking Day.

and here 
69.  TMBMT on the pain of growing up undiagnosed.

70.  Tony Belcastro writes about what autism is like for him and how it has affected his life.

71.  Toxicology Doc on communication.

72.  Unstrange Mind on what you would have to do to really understand how her autism affects her.  Hint: it’s not turning off your computer.

73.  The Untoward Lady on autism and love.

75.  Zachary Lassiter on why many autistic people won’t be participating in Communication Shutdown.

76. I missed Nick Walker's post before, but here it is now.

77.  Also missed Jo's blog post here about the difficulties she has encountered raising a son with Asperger's.

78.  Wendy on alt med, food allergies, and other things.

79.  Spectrummy Mummy on her experiences with Autistics Speaking Day. 

80.  Elesia Ashkenazy's ASDay post.

The Media:

There are some other lists here.


If you are participating, I’ve receieved a message from Joel Manzer that participants can submit their posts to Autisable and they’ll be happy to highlight them on the first page.  Autisable is here.

And although they didn’t write a post for Autistics Speaking Day, I think it’s really important that everyone check out Families Aginst Restraint and Seclusion.  Check out the video here.

Again, the event page on Facebook is here.!/event.php?eid=140107279369668  And in case you didn’t get the message, we now have a permanent page for Autistics Speaking Day.  Like here if you would like to participate again next year.  Thank you all so much for participating, and I wish you all an awesome Autistics Speaking Day.

Saturday, October 23, 2010

More on Autistics Speaking Day

So all things considered, my Autistics Speaking Day event on Facebook is going pretty well.  For those who didn't read my last post, this wasn't my idea, but I decided to try to publicize it by getting it on Facebook where people could spread it to all their friends.  It's been pretty damn successful.  Only 73 are attending so far, but at the moment of this writing I have 8 blogs participating and we have been written about in the Examiner.  My mother is so proud.  I'm hoping to go further with this and I'm hoping news will spread to more people.

If you know anyone who might be interested, let them know what's going on.  If you have Facebook, RSVP to the event and invite your friends.  If you would like to participate, message me on Facebook, e-mail me at, or comment here.  I need your name (whatever you want me to put on the page; real names not necessary if you don't want to give it out) and the URL to your blog or website.  When everyone posts on November 1st, I will message everyone attending the event with links to all the blog posts.

If you have something to say to the world about your life as an autistic person/person with autism, this is your chance.  Please join us and participate, and speak out on November 1st.  Shutting down Facebook for a day won't teach anyone a thing about autism, but blogging and letting at least a few more people know what we're thinking might have some sort of effect.  Thank you in advance for your participation and/or support.

Friday, October 22, 2010

Autistics Speaking Day

I'm posting this from the fiance's Mini Cooper.  He has one of those fancy Evo phones that lets him give a wi-fi bubble to nearby friends.  Ooh...just passed a Dairy Queen but we couldn't stop for ice cream.  :(  Anyway, we're on our way to pick up a friend of ours, who is also my maid of honor, from college.  Because at 2 PM tomorrow I have an appointment with David's Bridal to try on wedding dresses, and I wanted her to be there.

Anyway, I've noticed some blogs I follow talking about that "Communication Shutdown" event.  It's been pretty controversial, for reasons people here are probably already aware of, but just in case let's go back over it.

1. Autistic people are not silent, online or offline.

2. Non-autistic people will have no more clue what autistic people's lives are like simply by staying off of Facebook for a day, because while they are avoiding their computer, they are still not autistic.

3. The invention of the Internet has prevented autistic people from feeling so isolated. Autistic people use social networking sites, forums, and blogs to talk to other autistic people, and even nonverbal autistics or autistics who have difficulty effectively communicating have an opportunity to socialize online.

So inspired by Corina Becker, I searched in Facebook for a link to an event that I could invite all my friends to.  There wasn't a Facebook event yet.  But Corina's idea was such a good one and I felt so strongly about it that I spent some time typing out info and created an Autistics Speaking Day Facebook event myself. 

I have about 409 Facebook friends.  I invited all of them.  I'm not trying to steal Corina's idea (in fact, all credit goes to her because I've been a fan for about 6 months since I discovered her blog), but I wanted to get the word out about it because it's so brilliant.

So if you're reading this and want to participate, and you have a Facebook account, go here and RSVP (and then invite all your friends!).  If the organizations that pretend to raise awareness without defining it or making understanding of autism any clearer want to keep doing stupid publicity stunts like this, they can keep doing it, but autistic people aren't turning off the Internet and I hope we'll all be online doing exactly what Corina has suggested.  So when all the "awareness" raisers are done patting themselves on the back and come back to their computers, they'll see we spent the day speaking out.  I think we will  be far more productive, no matter how few people participate.

Thursday, October 21, 2010

So I have followers...

It's kind of weird to be actually interacting with people whose blogs I've been reading on my RSS feed for months.  But it feels good so I'm happy about it.  ^-^

A couple of people have asked me about the title of the blog (particularly on the reason I used the name Katy when most of my friends have only known me to go by Kat or Kathryn).  It's kind of a long story so you'll have to bear with me.

In 1993, when I was about 5, my family moved from a town called Belleville to a town called Smithton.  Belleville is okay.  It has about 45,000 people and is less than an hour from St. Louis.  Smithton is a tiny town about seven miles away from Belleville, and at the time I moved it had about 1500 people (although now it's around 3000 because there was a population boom two or three years after I moved in.  Smithton is the kind of place extremely conservative racists move to when they don't want their kids going to school with "gangs."  Although one or two families were more honest and just said the N-word.).

My family lived in a Victorian house that had three bedrooms.  My mother wanted us to move to a bigger house so that my father's parents could move in with us, and she also hoped that she could send my brother and I to a better school, because the kind of education she'd had at Belleville's public schools wasn't waht she wanted for us.  We happened to find the house in Smithton that had five bedrooms, and it was cheap because the large family living there had to sell it fast.  So we moved in and I started my second year of preschool at Smithton.

The last preschool hadn't been too much trouble for me, although the teacher tried to get me to play with other kids more and I wasn't usually too interested.  But my first day in Smithton's schools involved me getting pushed down by another little girl and told that I didn't belong there and I should go home.  I told her that I lived in Smithton now.  She insisted that she didn't believe me and somehow this turned into a chant, sung in an annoying, sing-song voice (or voices, usually in unison): "Katy doesn't lie in Smith-ton!  Katy doesn't live in Smith-ton!"

It's a stupid insult, to someone who is much older.  But to my five-year-old mind it started out annoying and became meltdown-level  frustrating when I could not use reason to convince them that I actually did live in Smithton now.  I couldn't even comprehend until much later that they didn't even believe that, but were doing it for the sheer joy of my overreaction.  It became a constant thing.  My attempts to bring it up to the teachers resulted in me being put in time-out for being a tattle-tale and a crybaby.  I was shoved off of playground equipment, and since I took things very literally and was gullible as a child, I was easily convinced that new kids were not allowed to play with whatever toy I wanted to play with.

Unfortunately this only grew worse when I got older.  In kindergarten, there were even more kids to pick on me.  I made a few friendships but these were easily shattered when my new friend discovered that I was a freak and associating with me would result in strong social repercussions.  This would result in new friends immediately turning around and harassing me like the other kids, and it was very confusing for me.

I could never fit in, no matter what I did.  I excelled in school, reading 8th-grade level chapter books by the time I was in first grade.  This made me an even easier object of derision, and my second-grade teacher decided I needed to be sent to a psychiatrist, who quickly put me on Ritalin and later Imipramine.  I'm sure I will get to that nightmare in another blog post.  But it was instilled in me by the teachers and doctor that the most important thing in the world, more important than being happy or being myself, was to fit in.  I didn't fit in; that meant I was the problem.

The system worked for the bullies, who were too numerous and powerful to be punished, and I was the unfortunate victim and scapegoat.  It was easier for the issues to be blamed on me than to admit that Smithton had a bullying problem that needed to stop.  I was hardly the only child at the school who was bullied horribly, but in my year I was unusual for the sheer amount of people who hated me and were disgusted by me, and even the other kids who got bullied avoided me or bullied me themselves, just  to avoid the stigma that would come with being nice to me.  I was getting harassed by kids two and three years younger than me and two an three years older than me in addition to the 40 kids in my own grade.  I changed my name to Kat and the chant stopped, but the bullies moved onto new and more interesting forms of torment.

If you've seen Carrie, you have some idea of what life was like from third to eighth grade.  That's a long time to spend being hated by everyone you know.  I felt like something horrible within me that everyone else could see except for me made me an object of disgust and loathing in the eyes of every person who laid eyes upon me.  This wasn't just my outfit being made fun of every once in a while.  This was sexual harassment, accusations of depraved sexual activity (this coming from nine-year-olds), threats of sexual and physical violence, constant name-calling, occasional physical attacks (there were frequent "accidents" in PE that ended with  me getting struck in the head with basketballs, but I also endured a few beatings), thefts, rude notes, rude comments, and barking at me every time I walked down the hall.  Not all of those things would happen every day (although the last two certainly did happen on an every day basis, as did the second), but they happened often enough to keep me constantly terrified.  I had no concept of self-worth any longer, and by the time I went into high school I was so messed up that I didn't know how to make friends.  Smithton nearly killed me.

Smithton has come to symbolize to me over the years societal pressures to fit in, strictly-enforced conformity, mediocrity, and suburban ennui.  Smithton used to seem like a fantasy land of new locations and new people that I could fit in with if I really tried, but it was not that.  It was a prison.  It was a toxic Stepford Wives kind of environment, and I hate it.  The people I'd been trying to fit in with were all monsters or people who refused to take a stand against them.  I've come to realize that I don't want to belong there anymore, and when I was a teenager Smithton became something I wanted desperately to escape.  Recently I did just that and moved back to Belleville, and it has been great.

So today that old playground taunt, "Katy doesn't live in Smithton," is no longer a failure on my part to fit in, but a success on my part because unlike the rest off those poor angry children who are now depressed 21-year-olds living with their parents and dreaming of the high school days when they were popular, I did not belong there and I proved it by getting out and taking control of my own life.  When Smithton became the consolation prize and not the goal, I won the game.  And now I am thrilled that I do not live in Smithton and that I never belonged there to begin with.

I've only recently been able to forgive myself for making myself an object of ridicule.  It's too much to expect an undiagnosed autistic child who didn't have a chance to begin with to be able to get herself out of that situation.  I did everything I was supposed to do and reported the issues to the proper authorities and they refused to protect me.  None of that is my fault and I had been harboring so much guilt over it that I could barely function.  The wounds seemed fresh and raw only a year ago and now Smithon is just a distant, painful memory of things that once happened to me.  Because now Smithton doesn't control my life.  I do.

Wednesday, October 20, 2010

On getting my ass moving...

I keep not posting and I really don't know why, although now that I think about it I guess I'm afraid no one's listening.  I have a lot of connections with other autistic bloggers and so on but I haven't exactly gone out and invited everyone to start reading the blog.  I'm kind of terrified of the idea that I could post something about people from my personal life and forget that it may offend them.  Because this is the first time I've had an idea of myself putting things out in public instead of keeping them in private conversations.  Oh, well, I'll cross that bridge when I come to it.

So a sorority at my school was raising money for Autism Speaks.  I was going to lunch with a friend from class and I turned and saw one of the girls waving a sign with the little puzzle pieces on them.  I was so angry.  I was just shaking with anger and I could barely think straight.  I went up to the table and asked them if they supported eugenics and told them they might consider finding a new organization.  Actually that makes me sound too well-organized.  I was kind of in mid-meltdown (and meltdowns don't leave me with much room for effective communication), so I wound up stuttering out something that made me sound a little insane and then running up the escalator.  I couldn't concentrate in class; I was shaking still an hour later.  So I stopped trying to take notes on my computer (which I sometimes use instead of notebooks for the sake of organizatino) and instead typed an e-mail to someone in my school about it, hoping it would get someone responding to me. 

I was very surprised when I got a meeting out of it with the advisor for Greek Life and someone at the Student Life center.  I organized a bunch of  data on why Autism Speaks is bad (if you don't know about this I think sums it up pretty well and a Google search can get you the info as well.)  So I managed to convince the boyfriend to take off work to come with me because I was terrified and I am not good at that sort of thing, and he works for the government so he is used to the kind of bullshit I expected to encounter.

They were surprisingly polite and seemed pretty sympathetic to me.  I was surprisingly conversational, although I'm sure they weren't used to someone being that eloquent while staring firmly at the table for an hour.  I tried very hard to fake eye contact and I just couldn't.  It always sounds like it will be easier when I'm thinking about it than it is when I try to do it.  They told me they would talk to the sorority but they couldn't really do anything about what student organizations raised money for.  Basically, they could raise money for the KKK and the school can't do anything about it.  The important thing is that they actually listened to me for an hour and took the information I gave them, along with a list of other organizations that would be more suitable to raise money for if the sorority is really interested in promoting supportive services for autistic people.

I also got information on how to form a student group for disability rights.  It's entirely probable that next time the sorority or anyone else tries to raise money for Autism Speaks, I may have a few people willing to picket them with me. 

I recently got an e-mail from Disability Access Services from my school.  For a little background, I went to DAS as a freshman asking for them to help with things related to my hearing loss and my autism.  They were kind of the opposite of help and we couldn't figure out a way to make them do what they were supposed to.  Although they did tell me I was to meet with one of them once a month for reasons I can't exactly figure out.  Went to two meetings, but the second one (with the coordinator of that office) happened while I was sick with a mild flu.  I asked her awkwardly at the end of the meeting if she knew how I could see the campus clinic next door.  She seemed alarmed and took me there herself, and told the girl at the front desk I needed a psychiatrist and it was an emergency.  I had to explain in front of everyone that I was not in fact suicidal and just needed someone to check up on my respiratory illness.  I left without seeing a doctor, feeling both embarrassed and weirded out.

Then I broke my foot badly.  I had an avulsion fracture of the 5th metatarsal that required two surgeries to fix.  I am too uncoordinated to use crutches so I was in a wheelchair for two months.  I wasn't too upset because my brother had brittle bones when we were growing up and I'd used his wheelchair before; they don't actually suck as much as my friends seem to think they do.  But my school has a lot of hills so my father had to take me to school every day.  One building I had three classes in was an older building that only had one door that was accessible for a wheelchair user.  When I tried to get into it for the first time, I found that it was locked.  There was a card slot next to it, so I tried using my student ID but it wouldn't work.  My father had to go around into the building and open the door for me from the other side.  I contacted DAS to figure out how I would get in the building.  They said they had to put something on my student ID card to make it work in the door.  I asked if they would do that for me, and they said no.

DAS has never done anything to help me, even though I have only asked them for the simplest, least time-consuming things possible.  So I'm not a big fan of them.  And today they sent me an e-mail letting me know about their exciting news.  Seems they have a new office space (yay for them) and the old coordinator who gave me so much trouble has retired and a new coordinator started in her place.  I wrote him an e-mail detailing my experience with DAS.  I then asked him if I could continue to expect the same level of services s before or if they would actually start helping the university's disabled students, which is what they are paid to do.  Haven't gotten a response yet, but I felt awesome after sending  the e-mail.  I just sent it today, so I figure I'll wait a week for a response and then decide what to do.

In other news, October 1st was my one-year anniversary with Sean, and he proposed to me.  He took me out to eat and when we were standing outside the restaurant looking at the sunset, he pointed to a nearly jewelry store and told me I had to go with him there because he didn't know my ring size.  I couldn't talk for a minute and just made excited squeaking sounds while I hugged him, and then I said yes, even though he hadn't asked the specific question. 

So we went inside and explained to the people we were looking for an engagement ring but I don't like diamonds (not just personal preference; the idea of blood diamonds makes me queasy).  So we wound up doing a custom sapphire ring with a light blue stone.  It was awesome.  Now I'm doing wedding planning.  So between this, school, and everything else, I have suddenly become a very busy person.  But I like constantly having projects so I suppose that's all good.

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.