Saturday, April 26, 2008

Spamming for a Cure: Goofus and Gallant Show You How

Goofus makes things up when he is angry. Here, he accuses a woman without children of being a bad mother. And a man.

Gallant is always honest. He knows nothing about this autism business, and doesn't mind telling you so!

Goofus is a "spammer."

Gallant remembers to use his manners, always identifying himself and using the polite words he learned from his ABA therapist.

Goofus couldn't care less about autistic adults.

But Gallant knows that "helping" is not a burden!

Friday, April 25, 2008

Hiding and other party games

Is it possible to enjoy a social event, such as a party? Often, the answer is “no.” This is also the response I usually give to party invitations: No. Not my idea of a good time. Over the years, I have developed a number of strategies for surviving those parties at which attendance has been mandatory. In general, these fall into the two broad categories of “hiding” and “helping.”

First, about hiding: There are more ways to do this than you may have imagined. As a child, I sometimes took refuge under a table or in a closet when overwhelmed. This sort of hiding is possible for adults, too, but requires more space. The basement of a house is a place you can often go without getting into too much trouble with the hosts. Going into bedrooms and other private areas is not a good idea, unless you have asked permission first. This makes people nervous, and they may even think you are planning to steal something. The bathroom is not a good place to hide. Sooner or later, someone else will want to use it.

One of my favorite ways of hiding is to wander off. To use this technique, wait until you have become invisible. Or, walking quickly, imagine that you are thinking hard about something you need to accomplish (with any luck, this will result in a universally recognized “busy face” allowing you to exit the room without being stopped). Then, just slip out the door, and take a walk until you are ready to return. I have even driven away from parties and returned later without anyone knowing. It goes without saying that you should bring your own car (if you drive) or have the number of a taxi handy, in case you need to leave for good. In this case, it is best to let someone know that you are leaving; if you can’t bring yourself to say goodbye, it is a good idea to call the host on the phone and say something like, “Thanks for inviting me; I have gone home now.”

“Helping” is another way of dealing with a social event. Helping is nearly always welcome; be the first to offer in order to get the best and most time consuming jobs. For me at least, having a practical role to play or a semi-complex task to complete makes being in a group much easier. I have sometimes responded to invitations by letting the hosts know that I could only come if I could cook and/or serve the food for the event. This technique allows me to stay in the kitchen for most of the party. By concentrating on recipes, presentation and refilling plates, I find that I can easily be seen as “too busy” to chat, rather than “unfriendly” which is the more common assumption people make when I am not able to converse with them.

The only problem with the kitchen work plan is that some parties tend to experience a kitchenward drift. Before you know it, there can be more people in the kitchen than anyone should have to deal with. Raising a large knife in the air while yelling, “Get out of my kitchen,” does not always go over well. Especially at someone else’s house (you will have to trust me on this). Instead, at this point, it is better to declare the job “finished,” and adopt one of the hiding strategies.

This week I attended a reception. I had a good time there, neither hiding nor helping to weather the event. I stayed for nearly an hour, talking with the others, relaxing and enjoying myself. The reception was for a group of autistic kids and young adults who had just put on a dramatic performance at a nearby university. I moved from one to the next, hearing about the perseverative interests, participating in various scripts. No one cared how long it took me to say things, no one tried to force eye-contact. No one asked vague or personal questions with complicated answers (“What do you do?”) There was some rocking and flapping, lots of laughing at things most people wouldn’t find funny. One person even squawked...I left there sorry it was over, and with the odd thought that maybe I’m not so anti-social after all.

Friday, April 18, 2008

You may already be "aware"

Is it an epidemic of alarming proportion or merely the latest disease-of-the-week? Whatever you believe, you have surely noted the recent media attention paid the sudden increase in the disorder called “awareness.” Not to be confused with its un-quotation-marked cousin, awareness, this is an insidious condition threatening to numb the minds and consciences of the multitudes through an endless parade of meaningless rhetoric. Worst of all, you may have this condition and not even know it! While “awareness” manifests in a variety of forms, for purposes of this article, we will focus on autism “awareness,” one of the most prevalent varieties. Here is a brief quiz to determine your “awareness” quotient.

True or False:

1) You have more than one (1) of the following “awareness” promoting items in your possession: ribbon; t-shirt; bumper sticker; button; clock; potholder; corkscrew; coat rack; exercise bicycle; cat litter scoop.

2) You have heard that some autistic people find the awareness ribbon offensive. You don’t understand why, so you continue to display the ribbon.

3) You have been told directly that some autistic people find the awareness ribbon offensive. You understand exactly why, but you can name two or three autistics who disagree, so you continue to display the ribbon.

4) You have been told that some autistic people find the awareness ribbon offensive, and you do understand why, but they are wrong, and you are right, so you continue to display the ribbon.

5) Your own autistic child has expressed unhappiness about the ribbon, but you continue to display the ribbon.

6) You make every effort to sell or otherwise distribute the ribbons at community events, some of which have nothing to do with autism.

7) When asked to explain what “awareness” means to you, you mumble something about tragedy and “needing to find a cure.”

8) Your definition of “autism” has little to nothing in common with the recognized diagnostic criteria.

It is important to remember that “awareness” is a spectrum disorder. To judge your own level of “awareness,” first answer questions listed above. For each item endorsed (true), add points according to this scale: Number 1 = 1 point; 2 = 2 points; 3 = 2 points; 4 = 3 points; 5 = 5 points; 6 = 2 points; 7 = 2 points; 8 = 3 points.

Your score:

1-3: Typically "aware"
4-8: “Awareness” Not Otherwise Specified
9-12: High functioning “awareness”
13 and over: Severely “aware”

Do not despair! There is hope a clue will be found. Please use the new ribbon pictured below to let everyone know that you are now “aware” of the “awareness” epidemic. And don’t forget to do your “research.”

This public service announcement was made possible by ABFH, who pointed out the need for this new "awareness" ribbon, based on information about the (puzzling) ribbon culture found in this post at Autism Vox. Thank you ABFH, and Kristina Chew.

Thursday, April 17, 2008

What I learned from Squawkers McCaw

Over the past decade, a number of studies have investigated the educational and therapeutic value of robotic toys for autistic children. Kirsch’s 1999 Affective Tigger study explored the development of recognition of emotion in typical children. Kirsch also theorized that the interactive plush toy might meet the needs of autistic children for repetition and consistency, allowing easier learning of emotion recognition.

A number of studies have focused on Robota, a series of robot dolls capable of mimicking arm and head movements, as well as speech response. Kaspar is a child-sized humanoid robot developed by the Adaptive Systems Research Group at the University of Hertfordshire. Kaspar evolved from the Aurora Project, led by Prof. Kerstin Dautenhahn at Herfordshire.

And what of Squawkers McCaw, a “regular” toy for autistic and non-autistic children (and adults)? I have semi-seriously considered proposing research on Squawkers’ suitability as a starter communication device for non-speaking children. Capable of storing 18 customized phrases, playable at the touch of a button, Squawkers is friendlier than The Special Life’s Go Talk, not to mention less “special.” Squawkers might do a better job than a Smart Speak in allowing the user to appear “indistinguishable from his peers.” (Unless the peers are around my age, that is.) Of course, to be practical, the parrot’s memory would need to be increased to store more words and phrases, but the current Squawkers might be useful in assessing whether such a device would be appropriate for a particular child.

The appeal of Squawkers McCaw as AAC is in the design. His movements and sounds are realistic enough to engender something very much like empathy. Am I kidding? Not really. My feelings for Squawkers are well known among my acquaintances, online and otherwise. Consider the implications of this:

Take one person prone to obsession, already enamored of toy talking birds. Add one Squawkers McCaw. Soon, the person wants to talk about, write about, spend time with Squawkers McCaw ad nauseam. Other people are fed up, or at least getting bored with this. This only serves to make the bird more important. (Threat of alienation increases need for sameness found in comfort object.)
From here, there are several directions this could go. Assembling a large flock of siblings for Squawkers is not economically feasible. Fortunately, this interest has taken a promising turn in this particular case, expanding to embrace Macaws in general. This is where I see some (anecdotal) evidence for robot toys as agents of empathy.

I started looking at parrot rescue sites. So many beautiful birds out there have been taken for pets and then abandoned. Some have been abused. It is truly heartbreaking to see this. There are a few good places, though, that are working to help them. The one I liked most after looking them over is called Feathered Friends Forever. One of the largest parrot rescue facilities in the US, they adopt out some birds (No selling and no breeding!) and house many others permanently. The birds live in large outdoor flights and in a park open to the public. You can see some of them here. The one I chose to help sponsor is called Sky. Squawkers McCaw is pleased with this development.
The macaws pictured here are Birdly, Sky and Jonah from the FFF site.

Tuesday, April 15, 2008

The power of pride

Last night my father called to tell me that he was proud of me. In less than three weeks, I will have completed the work for my first university degree. He is proud that I have been able to set a goal and see it through. It’s not the first time he’s ever said it, I’m sure, but I don’t have a huge storage vault of these memories either.

I grew up feeling that I was a disappointment to both my parents. I heard a lot about the ways I was not what they had expected. They were careful to make regular statements of encouragement (and even, occasionally, pride) too, but the things that stuck were the words that told me I’d never amount to much if I didn’t ______(fill in the blank). That I had enormous potential, but no common sense and no initiative and no tolerance for adversity. I didn’t talk, walk, play, work, act or even breathe quite the way I was “supposed” to. No number of I-will-always-love-you-no-matter-what’s could ever erase that knowledge. I learned that I was defective.

I don’t want to give anyone the wrong impression here. My parents are good people, loving people. They took care of my basic needs and were very indulgent in some ways. They did the very best they knew how. The only thing they couldn’t do was hide their disappointment. I’m sure they tried, but couldn’t make sense of how I could do some things very well and other, simpler things seemingly not at all. How could this not be volitional? There was no way of explaining the person I was that didn’t sound like excuses or lies.

Today was a good day. I felt both peaceful and confident, even through numerous errors and gaffes. Soon, I will graduate from college. My father is proud of me. I am forty-seven years old.

Monday, April 14, 2008

Who Is This Kid You Ask?

Meet Ms. Crip Chick. Many of the people who read this blog and other blogs on Autism Hub will already be familiar with cripchick's weblog, where you can find insight and experience relevant to ableism, racism, sexism, the whole gamut of isms, really. For those who are not readers already, I encourage you to check it out. Here's a sample of her writing, from her "about" page titled "Who Is This Kid You Ask?":
I’m the one that catches your eye in a crowd because of the way I talk, move, breathe…Yes, that one. The disabled girl. No, no, don’t be alarmed! You don’t have to run away or ignore me— I’m not interested in becoming the object of your charity (though I’m sure you have a very loving heart) and I won’t suck you into a conversation about how much my life sucks because actually (and this is a secret a lot of people don’t know,) but a lot of disabled people like their lives! We do have issues and face oppression– no doubt– but many of us don’t consider our disability the problem but rather ableism and a society that refuses to see disabled people as human. Shocker, I know. You can let that one marinate a bit.

Recently, I talked with Ms. Crip Chick about the various ways autistic people view the concept of disability. While there are undoubtedly issues specific to autism, there are also the many issues we have in common with other disability communities--oppression, devaluation, attitudes toward accommodations, the question of who has the right to define who we are and how we are discussed.
Ms. Crip Chick kindly agreed to answer a few questions about her viewpoints, blog and experience. Here are my questions and her responses:

1. One of the things I enjoy most about your writing is the way you explore the different aspects of your identity with respect to the varieties of prejudice that can be visited on a single person. As a self-described “everyday queer disabled Corean girl living in the South,” do you see yourself as having a “master status” or role that defines and puts the other roles in some sort of context?

I don’t think I can put one part of myself over another but I am very aware of how disability specifically impacts the other parts of me. For example, disability directly 100% affects my identity as an APIA/Corean woman of color because my disability has influenced my involvement and acceptance in my local Corean-American community. I think writing this blog has really let me see how much I talk/think/feel disability as it’s something that’s the focus of almost every entry (and theme, and poem, and penname)! At the same time, my relationship with other women of color or my identity as a queer person or as a young person in a movement of older activists also impacts my experience of disability. They’re all so tied together it’s really hard to pull anything a part. Does that make sense? Maybe I do not want to use the word master status because right now there is such an effort to make things into single issues (i.e. the idea that you are either a woman or a person of color, or queer or disabled, not both) and although I feel people see me as disabled before they see me as a woman, queer person or Corean person, I don’t believe my identities can be split apart.

2. What would you say to someone who rightly denounces racism and ableism, but views homosexuality as a moral failing?

This is something that surprises me, although I’m not sure why since so many parts of the Disability Rights Movement are conservative (especially here in the South!) It is so important that we work on community-building and coalition building between communities, especially since there are so many common issues (disabled bodies and queer/trans bodies being medicalized, healthcare/housing/employment discrimination for people of color, queer people, and disabled people, long histories of abuses/sterilization/hate crimes, colonization of our bodies and minds, alienation from communities of faith, lack of representation, issues around identity and “coming out”, etc. …) One thing I really appreciate about Reproductive Justice Movement is that activists take on everything with an intersectional approach. It is the only way to achieve peace AND justice.

3. Has blogging changed your life offline in any significant ways? Is there much intersection between the people who read your blog and those you interact with face to face? Does your mom read your blog?

OH YES, in fact this question inspired a blog post hehe. It’s funny to think how much just keeping a blog has really affected me, especially since I only started in August (8 months ago). I started this blog right after I came home from a congressional internship in D.C. Washington D.C. is considered the home of a lot of the disability leadership and interacting with them allowed me to really start thinking about things, for example, why political leadership and advocacy is the priority for our community, how movements get co-opted and watered down, importance of disability culture in ANY disability-related work, etc. I process things by writing them down so I started it for to flesh these ideas out.

Through this blog, I’ve met so many amazing people who have really…just expanded my personal growth. New friends and old friends have exposed me to new ideas and activism, plugged me in, held my hand when I was upset, etc. I think people view blogging as putting something out there, a one-way dialogue but it’s really about community. It’s not about what you write but the comments and conversations that start afterwards. Blogging is a wonderful medium to connect with people and take part in really active movements and communities (i.e. media justice).

None of my family members read my blog, thankfully. If I was going to quit blogging, it’d be because one of them found it. I’m not out to my family yet (re: queer identity) and though we’re very close, it would be really bad timing to tell them since I live with them and they provide some of my care (and the fact that they’re devout evangelicals). I try somewhat hard to stay anonymous online.

4. I enjoy the poetry on your blog; it is very good writing and often very personal. (My personal favorites are "bras and eggrolls," " the scar," and "Saranghae Umma.") Do you submit your work to magazines, or are you planning a book sometime in the future? Does putting poetry on your blog feel more vulnerable to you than other types of posts? Has anyone ever gotten angry with you for writing about them?

Last week was my first time reading a poem to an audience and I was scared more than I’ve ever been in my life. Before I went up on stage (in front of 1300+ people at a conference), another speaker made a joke about a US poll that says X amount of people are more scared of public speaking than death.. I couldn’t help but think “omgsh, that’s me!!!” lol.

I’m not sure if you can tell with my writing but I’m actually a very new poet as well. I started around the same time I started my blog so I haven’t thought about really submitting anything to an anthology or magazine yet, although I love the idea.

I’ve deleted some posts off my blog, just as I’ve deleted some entries. I think maybe when people respond to poems v. a regular piece, it means more to me because yes, the poems are more personal and it’s comforting to know someone had some kind of connection or shared experience.

I would like to thank Ms. Crip Chick for her thoughtful and thought-provoking responses. Please visit cripchick's weblog to read more. A couple of my favorite posts are here and here.

Sunday, April 13, 2008

Saturday, April 12, 2008

Magical Thinking

Today, maybe I’ll will myself to fly. Yes, possibly, I’ll just float to work, leaving my gas-hungry van behind. It will blink sadly in disbelief that I would prefer this nearly effortless flight to its stoic and mostly dependable service. I haven’t taught it how to talk yet, but I will get around to that over the weekend, between twitching my nose to clean the living room and waving my arms windmill style to produce from nothing a gourmet meal for Elvis, who has finally learned to use e-mail, and says he will be arriving on Sunday. He’s become a vegan!

What’s that you say? I’ve lost my mind and must now be locked away from normal society? Well, somehow I’m not worried just yet. There are plenty of people in line ahead of me, if one is to be institutionalized for living in a fantasy world.

Some of these are the people who keep asking, sometimes even demanding, answers to questions which start, “If there was a cure for autism, then wouldn’t you...” Is there any autistic adult out there who hasn’t been asked? Oh, yes, I am aware that the “cure” is not for me, but for some other kind of autistic. I’ve been told that before. But if there was a cure, then wouldn’t I, shouldn’t I … want people to be able to have it?

Somehow, the questioners seem to imagine, someday, through science or miracle, a pill or injection or potion or spell will allow existing brains to reverse their development and rewire themselves into more typical brains. Maybe some people have a perseverative need for “what if” questions. Here are a few that might be more productive to consider:

What if schools took all forms of bullying seriously, and truly refused to tolerate harassment of students who were different?

What if every non-speaking autistic child was introduced to a wide variety of communication tools and strategies from an early age?

What if all law enforcement officials were trained to recognize signs of autism?

What if employers truly understood the benefits of accommodating all workers to achieve their goals?

What if only one tenth of the resources spent on seeking a “cure” could be used to support the needs of autistic people instead?

But now I’m really slipping into some magical thinking.

Thursday, April 10, 2008

The Point of Awareness

“The point of awareness for autism is to try to get a cure.”

I found this comment at the Anderson Cooper 360 blog last week. Correspondent Randi Kaye had written there about a young man named Dylan, interviewed for the CNN show. Here are two more quotes from other commenters on the same post:

“It is heartbreaking to see these kids. I am not sure if we will be ever able to find a cure or know if it is vaccine or genetics.”

“Thank you for bringing to light yet another face of this awful spectrum.”

What had these people been reading and watching? Something about self-injury or toileting issues?

This, in part, is the story of Donor X, who has fathered several autistic children via California Cryobank (CCB). Gwyneth Jackaway, mother of Dylan, chose Mr. X. as a sperm donor based on his IQ, interests in music and philosophy and his economics degree. She was rewarded with a beautiful son whose interest in subway systems has led him to memorize the entire NYC grid. The five and a half year old's other interests include painting, computers, Italian opera and the Fibonacci Code.

When she first learned that her son was autistic, Jackaway was alarmed. She contacted other Donor X recipients using a Donor Sibling Registry. Locating six other mothers, she found three more autistic children and a fourth who was said to be “showing some signs” of autism.

After a period of “tremendous sadness,” Jackaway appears to have had a change of heart regarding autism. Asked if she wished there had been a test to screen for it, she responded:

I've done a lot of thinking about this, and to say yes to that is to say that I wish Dylan isn't Dylan...I love my son and everything about him, and that means loving his autism also. Loving your children means loving everything about them. Our children don't have autism; they are autistic. It's part of who they are.

I like that answer, but that’s not why I’m writing this, why I’m still thinking about it. Nor is the point of this story for me the implications in terms of genetic etiology. It’s the fact that a mother can express such positive regard, and that a child can so clearly have much to offer, far from being a burden on society, and still…this is how the story ends:

"Per CCB policy, the donor's samples were removed from the general catalog.”

Not just identified or labeled. Removed. As if another child like this one would be unacceptable. For anyone who doubts the implications of potential prenatal screenings, here is a wake up call. Autism, even “shiny autism,” even when attached to obvious brilliance and supported by a loving and accepting family, is still judged to have no place in the “general catalog” of humanity.

In 20 more days, April will be over. Not that I'm counting. Just being aware...

Friday, April 4, 2008

Welcome to the "I am Kathleen" Scavenger Hunt

Yes, I too am (almost) Kathleen. Along with most blogs linking to Autism Hub and many others, Asperger Square is named in the frivolous subpoena received by Kathleen Seidel of Yes, that's right. Asperger Square, whatever that is. I have not taken offense at the slight variation in my name used by in the link to this blog. I was just happy to have the link from such an important site. Now I see that I have narrowly escaped being a party to this legal action. Whew!

Misspellings, omissions, etc. can be beneficial. Apparently, this foolishness pertains to the case of Lisa Sykes, leading me to note a small irony. I have, as far as I can recall, referenced the Sykes case once, obliquely. In that case, the name was misspelled intentionally, for humorous purposes. I wondered at the time if anyone even noticed the reference, since it was never mentioned by any commenter.

In the spirit of ludicrous games, I announce today a scavenger hunt. Can you find the reference to Sykes in this blog's archives? Please answer with only "yes" or "no" to allow others to join in the fun.

Scavenger hunts can be entertaining, and are much more civil than the witch hunt being conducted by Sykes and attorney Clifford Shoemaker. Be sure to check out the others who have found themselves to be Kathleen here and here and well, pretty much everywhere you look. We are all Kathleen. We will not be silenced.