Monday, April 21, 2014

Our Home at Autism's Edges

There's no doubt that we've been mighty silent over here at Autism's Edges. We've reported nothing, and missed most of our friends in the autism world. Some noticed and checked in, and we let them know privately what was going on. Then last month MamaGenius reached out on Twitter and asked where we'd gone:

We've been fighting a massive luxury condo development in our formerly quiet neighborhood. And the work of this has taken almost all the waking hours that haven't gone to teaching.

It started in November 2012 when we learned about the planned development, and has consumed us for the past year. Our girl has stepped up to help—postering the neighborhood, writing to Mayor DeBlasio, lobbying our neighbors on Christmas Day 2012 with cookies she baked and a petition to sign. I could not be more proud of her and of my neighborhood. We have all worked very, very hard to stop the assault on our neighborhood. Sadly, we are not winning.

When we went into the fight, we knew it would be tough, and that the chances of winning were slim.  The Bloomberg administration was gung-ho on development—especially of the luxury condos that now sit empty across the city while veterans and families and the mentally ill sleep in the streets, in the subways, and even under the scaffolding where the condos are being built. And Mayor DeBlasio seems to be following in his path, taxing empty lots to encourage development on every vacant lot in the city.

Construction of 16-story building
next to our home
So why go into a fight that you're not likely to win? The smart money in this fight was on the developer and the fancy charity that sold them their air rights in a real estate boondoggle. But smart or not, we went into this fight. Thinking about it now, I can only say that we did it because we love our neighborhood.

This is our home and our lives are as shaped by this place as they are by genetics or culture or anything else. This is where we conceived our girl and lived through morning sickness and preeclampsia. This is where we brought her home from the hospital on a freezing November day, a fragile bundle of blue and pink dreams. This is where we watched her grow, through hip dysplasia and colic and sleepless nights.

This is where she had her first birthday, and the sixteen birthdays that have followed. This is where I finished my dissertation and wrote my first book while she learned to crawl and to walk and to run. This is where she went to the local nursery school (soon also to be luxury condos). And this is where the seasoned preschool teacher named Donna told us something wasn't quite right. This is where we received the report, on the week between Christmas and New Year's Day 2001, that told us that something was wrong and that sent me to my computer to search (not yet in Google, but in Altavista and Yahoo) for the terms "perseveration" and "echolailia."

This is where we watched from the roof on that terrible day when the planes flew into the towers and the people tumbled from the sky and the buildings scattered in a hail of dust. This is where she grew terrified of dogs and finally outgrew that terror. This is the place where she's had a Christmas tree each year, and Easter baskets in the spring, and where she learned, in the end, that Santa is a myth. This is where she got her myriad diagnoses and outgrew so many of them. This is where the early intervention folk attempted their interventions of speech therapy and ABA. This is where she came home every night after a long day at school. This is where she learned to read, to draw, and to play.

It is so much, and it is so little, this place we call our home. It is just a small apartment on a formerly quiet, tree-lined street across from a playground where our girl grew up—but it has contained and shaped the narrative of our lives.

When our girl wrote to then Mayor-Elect DeBlasio to ask him for his help in stopping the development that will steal the sunlight from the playround, this is part of what she said about what is happening to our home: Where I live and where my neighborhood lives isn't just a part of the city. It's a part of our happiness that will be taken away forever. 
 
From our girl's letter to then Mayor-Elect DeBlasio. He never answered.
And so we love this place in a way that isn't rational. We love this place because it has been the place that has shaped our lives. And we had hoped, in some small way, to shape it as well: to cherish it, to keep it safe from the assault of the developers. We wanted our girl to know that she can join with her neighbors for something she believes in and make a difference. We couldn't bear for her to fall prey to the cynicism and apathy that our oligarchy breeds. But alas, she may yet, because surely they are winning.

The battle may not yet be completely over, but we're pulling back and regrouping. And so we find ourselves back home, back at Autism's Edges. And there are nearly a year of adventures I've yet to report on. I'll have to fill you in on how our girl went from scoring a 64 on her Regent's Earth Science exam to scoring an 86. Yes, a 22 point gain in just three weeks of studying! And I'll tell you about her first walks around the neighborhood on her own, even as we both held our breath at home. And the week-long trip she took to the Grand Tetons with her classmates. And the most recent development: her first pal, a girl with whom she shares a passion for Pokémon and Barnes and Noble bookstores.

This is still our home. We have not moved on just yet. We don't want to move, and we're not quite sure we'll be able to stay in the shadow of the tower that will take away our sky and our sunlight. But stay or go, wherever we are, we know that we'll always be living at Autism's Edges. I hope you'll stay with us as we find our way through this the year ahead. Thanks for your patience during our great silence.

Sunday, August 18, 2013

Autism's Edges Visits the Lap of Luxury

photo credit: wikimedia.org
We decamped from the New York City heat to visit with my family in Los Angeles. On our girl's list of things she wanted to do in LA were: Disneyland. A waterpark (preferably Six Flags). And Rodeo Drive. Yes, Rodeo Drive.

I'm not sure where she got the idea that Rodeo Drive was worth seeing – we've never been exactly a label-obsessed family (unless Hanna Andersson counts for baby clothes) – but she was seriously interested in seeing these four blocks in Beverly Hills. Disneyland in August heat wasn't going to happen. I soured on waterparks a few years ago after an unfortunate encounter with a waterslide. So Rodeo Drive was on.

Badgley Mischka Shop, Rodeo Drive
Our girl was thrilled, eager to see what ultralux commodities were there on display. The first store we checked out was Badgley Mischka, with their shimmering chiffon evening gowns. Sweet M was enthralled looking at them, gently touching the poof of ruffles on one gown, dazzled by the jewels on another. All was well until a haughty sales person came over any said, "Please don't touch the gowns – they're very delicate. You can just touch the hangers to move them." To my surprise, the saleswoman's attitude rolled right off our girl. I guess that's the beauty of missing nonverbal signals in social communication.

Sweet M just went about exploring everything, but no longer touched anything. I was less sanguine, and said, "You know, my daughter is on the autism spectrum, and she learns by looking and touching, but she's also very rule bound, so she won't be touching anything else here."  She looked at me, icily, and said, 'Well, that's good.'"

This did not bode well for our continued Rodeo Drive visit. Sweet M would be just fine, but I might experience some class-induced emotional dysregulation.

Happily, every other store was amazing and welcoming: Max Mara, the Porsche Design Store, Christian Dior, Tiffany, Chanel. The staff were warm and friendly, apparently accustomed to visits from tourists from the 99% and accommodating of an autie teen girl thrilled to visit what she called "the lap of luxury." It seemed the higher end the store, the more gracious the staff were.

On our way back to the car we walked by the Badgley Mischka shop and looked in the front door. Amazingly, our previously haughty retail staffer was clowning around with an African American colleague, holding up one of the very precious gowns in front of herself.

I wondered what it's like to be a retail salesperson on Rodeo Drive, catering to the rich and their personal assistants while, perhaps, passing along a bit of attitude when you can. Thankfully, our girl hadn't notice any attitude; she was thrilled with her day. She's much less fragile than any evening gown, and ever so much more dazzling. 

Wednesday, July 10, 2013

Modern Rites of Passage: Or Reflections on the Tyranny of Standardized Tests

Please review the illustration below and answer the question that follows. 


Question from New York State Regents Sample Earth Science Exam, January 24, 2013.

Now pretend that your future college and employment options depend on your ability to answer said question (and 84 others like it).

And while you're at it, pretend that you are 14- or 15-years-old. And that you have an autism spectrum disorder.  Or dyslexia.  Or haven't had breakfast.  Or your parents just divorced.  Or whatever else might be going on in the life of a 15-year-old. 

Can you answer the question?

I can't.  Even if I don't imagine all the other variables in this thought experiment, I can't answer the question correctly. 

In fact, I can't answer most of the questions on the 9th grade New York State Earth Science Regent's exam.*

Has that hampered my prospects in life? Perhaps. I'm not an astrophysicist. I'm not a geo-engineer. And I'm not a meteorologist.  I'm okay with that.  I'm a tenured university professor at a highly-respected university in New York City. I've won numerous federal grants. I'm the author of a well-received book in my field from a major university press. Most people who know me think of me as rather well-educated and knowledgeable.

Usually I wouldn't share this information about myself, but it seems relevant to these tests as some metric of educational attainment.

But if I were 15-years-old today, there is a good chance that I would not earn a high school diploma in New York State. Well, let me clarify that. I might earn what's called a "local diploma" in New York State. 

Anywhere else (as far as a I know) a high school diploma is a high school diploma. But in New York State we have an educational caste system where some kids earn a "Regents diploma," some earn what's called a "local diploma," and some earn an "IEP diploma." 

To earn a Regents diploma you have to earn at least 65 points on five Regents exams: English, Math, Global History, American History, and one science (either Earth Science or Biology). To earn a local diploma you have to have 55 or more on these four exams. Without that, you either don't graduate or, if you have an IEP, you can earn an IEP diploma. You can go to a private college with a local diploma, but you can't go to the New York State University (SUNY) system, the most affordable schools in the state.

Since last summer we have been working hard to see that our girl will pass the five Regents exams that are required for the Regents diploma. The first of these exams took place in June. A passing score is 65 or above. A "low pass" is 55-64. And below 55 is a non-passing score.

After a year of work toward passing these exams, our girl earned a 64. That is, she missed a regular passing score by one point. One point. 

She had a near perfect score on the lab section of the exam: 15/16.  She routinely earns A's and B+'s on in-class exams that cover the same material. Her teacher said this exam just had too much vocabulary for her.

I was thrilled for her that she had passed, even with a low pass. Her father is heartbroken and angry that she didn't earn at least 75 points since she does much better than that in her course work.

For two weeks after the exam scores were in, we spoke, and argued, and spoke, about almost nothing else: he wants her to study all summer with him and retake the exam in August. I want her to have a summer break, revel in having passed it (4 of the 39 students in her class did not earn even a low pass), and start to look a the vocabulary for the upcoming Biology and Global History exams.

I understand his position: he thinks that these exams and the information therein actually matter in life. He thinks it's a worthy goal to pass these exams with high scores. And he thinks letting her get by with a low pass is giving up on her and her future.

And I think these exams are unnecessary and damaging hurdles that destroy a natural love of learning and replace it with a desire to pass, to score, to win – and often, to cheat a system that is unfairly rigged against our kids. I think they contribute to the single most annoying question I get in every class I teach: "Will this be on the test?" I think these exams are destroying our kids' lives, turning them into test-taking machines. Having her study for these exams is, in my mind, nothing more than a necessary evil.

So we don't agree. We won't agree. We've agreed to disagree. We haven't decided what to do: whether she will retake the exam in August or not.

What I do know is that as a society we seem to love our educational standards more than we love our kids if we are willing to subject them to this adolescent rite of passage called standardized testing.

So-called primitive tribal societies would incise their young people's skin with magical markings and rub in ash to create the raised welts of scarification, or send them into the forest to fend for themselves to mark the passage to adulthood, reincorporating them into the group when they healed or returned from their quest.

Here in New York State we are somewhat more subtle. The scars we create are invisible: we mark our children's neural pathways with specialized technical knowledge that will likely be of no actual use to them, send them into the ordeal of testing arena, and then reincorporate them into a stratified society based, in part, on how well they perform this task.

We can opt out of this rite of passage, but what sort of future can we imagine for our girl if we do? That is the question we have pondered for the past three weeks. What do you think about high stakes exams for our kids, ASD and otherwise? What have you done about such tests?

* The answer for the exam question, if not to these bigger questions, is "D. White dwarf." You can look at this exam and any of the other archived Regents exams at: http://www.nysedregents.org/

Friday, June 21, 2013

Friendship Movie Magic

Three weeks back our girl asked me if we could go to the new My Little Pony movie.

At a theatre.
Despite crowds.
Despite popcorn smells.

She wanted, quite passionately, to see My Little Pony: Equestria Girls on the weekend of its premiere.

It would be hard for me to explain how unusual this is. Let's just say that I can't recall the last time we've gone to a movie theater. Possibly it was a screening of Monsters, Inc — the first one, not one of the sequels.

My Little Pony: Equestria Girls was set to open on June 16th, Father's Day. That seemed an odd day to launch a movie if you actually wanted families to attend, but I put that out of my mind.  If her dad didn't want to come, he wouldn't mind our heading off to the movies and giving him an hour or two of peace.  

All week long our girl asked me, insistently, to get the tickets online. I had a busy week, so I put if off until Saturday, only to find that there were no online sales. Odd, I thought. But whatever, we'll just go to the movie a little early and get tickets at the box office.  

What I didn't know, and couldn't have imagined, was that the 11am screening at the Chelsea Clearview Cinema was the only one scheduled for the entire city of New York.  There was one the next day in Yonkers. And another in Montclair, New Jersey. But other than that, no screenings anywhere remotely nearby.

But no worries, I thought. We'll just get there early.  

When we arrived at 10:30, there was a huge line along 23rd Street with a few families with kids, but many adolescent and young adult men. We took our place at the end of the line and talked with a couple from Georgia who'd driven up to the city for the screening. They'd gotten their tickets online. That was when I realized I had a problem: we might have a Pony-less Sunday.  

I asked our girl to stay on line with the folks from Georgia and I went inside to find out what was up. The news wasn't good: Sold out. The only screening was sold out. I asked the usher if I could speak to the manager and she called her over. I explained briefly that I had a situation: 15-year-old ASD girl obsessed with MLP and no tickets for show. Could she do anything?

She wasn't sure, she said. She was trying to squeeze in an extra screening; she wasn't sure how that was going to work. But she told me she understood—she'd worked with kids on the spectrum. Then she offered, "It's really hot outside, your daughter probably can't tolerate heat, can she? Why don't you bring her inside, sit down in the lobby, and I'll see what I can do."  

I went outside to retrieve my girl and told the couple from Georgia that they didn't need to wait on the line because they had tickets. As the four of us walked in, many of the "bro-nies" booed as if we were jumping the queue. Very un-Lil'Pony-ish if you ask me, but we were undeterred.

Erin, the autism angel theater manager, did just what she'd hope to do: squeezed in an extra show just 15 minutes later. Bonus: extra tight scheduling precluded the usual reels of commercials and trailers.  

Our girl was completely enthralled throughout the movie: horrified at the misbehavior of Sunset Shimmer, terrified when the portal between worlds nearly closed before Twilight Sparkle could return to the Crystal Kingdom, and ecstatic when the ponies-turned-high-school-girls pulled together, stopped their bullying ways, and were getting the school auditorium ready for the senior prom.  

She was bursting with happiness—not just at the movie, but for days afterwards: "That movie was just awesome—what was your favorite part?" she'd ask me. She'd be grinning and laughing, and burst out: "I can't stop thinking about that movie!"  She told me it was so great that she couldn't get it out of her mind: she was playing it over and over again in her head in that way she can do that I can barely fathom.

This was a win. A big win. We have progress. We went to a movie. In a theatre. Without incident. (This last part, thanks to the extraordinary manager of the Chelsea Clearview Cinema. Thank you, Erin.)

But win or not, I find myself somehow forlorn, even bereft.

Perhaps it's just some maternal—and neurotypical—projection of mine that I mourn the reality that our girl is in high school and she has not yet made a friend, not a single one. Her pure pleasure at the sweetness of this movie, where friendship makes for magic, speaks to me of a longing to connect so vast as to be possibly unbridgeable. Will that magic ever happen for her? Will she find a way to connect? How do you connect when the things you love mark you as so young, so out-of-sync? 

She texted me when I was teaching yesterday.



It was an easy "yes."  I thought the screenings were over and the DVD release was set for August.  How could I know that the distributor had caught on to how many Lil' Pony fans there are in the city?

So tomorrow, 10am, Upper East Side, more Equestria Girls.

And who knows, maybe there'll be some other spectrum-y, oddball, equestria girls there. Somehow, somewhere, maybe we'll just find that posse of 15-year-old girls who still love the Lil' Ponies.

Tuesday, June 04, 2013

The Watermelon Problem (Or Just Another Day in My World of Social Calamity)

Today was Diversity Day at our girl's school.
Each family was supposed to send in a food from their cultural heritage.  To be honest, I had forgotten that it was Diversity Day. I've had a lot on my mind.  

Still, I figured, no problem – she and her dad can just pick up some croissants at the new fancy French patisserie around the corner in our increasingly hyper-gentrified neighborhood.  

He's French. I'm Irish-American. We usually send in Irish soda bread, so it was time for the more upscale interpretation of wheat flour. Except the French bakery wasn't open, so no croissants were to be had. 

Instead, her dad suggested that she take the watermelon from the fridge. 

To school. 

For Diversity Day.

No matter how many different ways I attempted to explain to the two of them that taking a watermelon to school for Diversity Day would be a tremendously bad idea, I just could get the idea across.  The idea that a watermelon could be racist eluded them both. Her dad, being French, didn't know the history of racist watermelon imagery.  

Our girl protested: "How could it be racist? It's a watermelon. It's fruit, it's healthy."

The school bus was arriving, they were determined that she should take the watermelon, so she departed, white girl with a watermelon in a sack for Diversity Day.

I emailed her teachers to explain and ask them to run interference on this cultural misstep. And then I sat down and wept.  

Some day this may be funny. Today, not so hilarious.

Monday, April 01, 2013

No Normal Blue Light Bulbs Could Be Found

I went to the hardware store around the corner from the playground to buy a blue light bulb.

It's April, so it's autism awareness month. Even though we're more an autism acceptance family than an autism awareness family, I figured I'd get with the program and light something up blue.

I was hoping for one of those old-fashioned, normal looking light bulbs.

But they didn't have any of those. Instead, they had this extraordinary twisty blue coil. Not even our autism awareness light bulbs are normal around here.

When I got it home, I said to the sweet girl's dad, "Look, I got a blue light bulb for autism awareness month."

"What's a blue light bulb going to do for us?" he asked.

He's got a point there.

A month or so ago a group of autistic people petitioned Google to change their search completion algorithm. Seems that the auto-complete function of a search for "autistic people should" came up with these as the most frequent searches:


When I saw this online – it came to me through my Google news feed on the topic "autism" – I was destroyed. And I was angry. And I was puzzled.

I wondered how anyone – let alone the majority of people doing Google searches – could think this way about my dear girl. About my friends' dear sons. About all of our kids and our friends who are on the spectrum.

Who are these people that think that 2% of the population should be exterminated?  Who are these people typing hate into the syntax of the internet that my girl loves?  I guess we won't know who they are, but we do know they were the majority of folks searching this phrase that month.

Google changed its algorithm – it no longer reflects the majority view. Rather it aims to shape the majority view. This is what it generates today:


And I got a blue light bulb – an energy efficient one, at that.

I don't know what it's going to do for us. I don't know what Google's altered algorithm will do for us either. But it's a start.