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.