The Family Room

Where to find me

If you're looking for my professional blog, Thought Experiments," which focuses on social technologies and analytics, please go to www.susanetlinger.com.

Where We Are

It's been over a year since I last posted, and yet I can never quite bring myself to say that I'm done writing about Isaac, autism and our life together. But I do want to tell you that he is in third grade, and we are all well and happy. It's just that he's eight now, and as he grows older and makes his own friends, it becomes harder for me to justify exposiing his and our life to the world.

I've met so many amazing people on this road, and learned so much from all of you, writers and readers alike. But while I'm not closing the door forever, I do need to put a milestone marker here and say "it's time." I will continue to post periodically at The Thinking Person's Guide to Autism and will pop in here periodically to post the occasional update.

Thank you all for reading, and for being part of this crtically important community.

Honored

So I've been quiet for a long, long time. But this morning I saw this, and it hit me hard in a way. Someone is still reading. So I need to think about what's next for this blog, and for the story of our lives. 

Long story short, we are fine. Far beyond what we would have imagined in the early days, but still wrestling with the many trials and joys. It's hard, I should say, but good.

So I need to think about this; about coming back and writing the post that's been forming itself in my mind for many months.

In the meantime, here's a preview of where we are. Isaac is seven now, a second-grader in full inclusion. Our issues have shifted to a different focus: the social rather than the pure communicative. We laugh a lot, and there are also many rough and prickly moments, and discussions about what we do when we have "big feelings."

Thank you, Parenting editorial board. I am honored.

Claire Danes as Temple Grandin? Really? [Yes. Really.]

 Not long ago I met a woman named Jovana Grbic, a biological chemist who has a cool little side-business consulting on science for the film industry. (You know: is it really possible for a volcano to engulf New York City? Could dinosaurs be cloned and raised as pets...and engulf New York City?) She invited me to do a guest post the next time a film about autism was released (possibly to stop my endless ranting), so I asked if I could take a look at Temple Grandin when I heard it was being released on HBO.

"Claire Danes?" I thought. "Really?"  

Yes, really. It's a treat, this film.  And not because it's perfect. (So few of us are). But because it tries to give us an inside-out view, something that I and so many of my friends have so desperately wanted.  It was produced by Emily Gerson Saines, herself the mother of a boy with autism, so it is full of a personal passion to get it right. 

Here's the review. You can find the film on HBO starting tonight.

Can Magic Help Us Understand Autism?

For those of you who don't know, I work with news media in my regular job, so I have a pretty good sense of how stories are shaped, from initial idea to final result. And because I am very concerned with the way autism is portrayed in said media (can you hear me, Autism Speaks?) I try to offer some POV when asked (okay, even when not asked :-) So I was happy to speak with Susan Donaldson James of ABC News about a research study conducted at the Barrow Neurological Institute in Phoenix, Arizona. 

The study is concerned with the joint attention of people with autism, and uses magic (yes, magic!) as a way to better understand how people with autism perceive situations differently from us neurotypicals. Is it true that people with autism can't be fooled by magic tricks?  Read the article and see what you think.

My role in the piece, entitled Autism Study Could Find Answers in Magic, was as the "balance"; I honestly don't know enough about the study or about neuroscience--let's be frank--to draw an intelligent conclusion about its results. But what mattered to me was that this piece not go down the path of so many that portray people with autism as cold, robotic, and, unfailingly, "locked inside a world of their own." 

Those stories tend to negate the humanity of people with autism--a spectrum as wide as the Montana sky--and, I fear, terrify parents, especially the ones with new diagnoses, at a time when they are most vulnerable. And it's important to remember that communication is a two-way street: just because people with autism may be looking in a different direction or have a different expression from what we would deem "appropriate" in a particular situation, that doesn't mean they lack feeling or a sense of mutuality with us.  They just may process and express those feelings differently. 

So I was thrilled to see Ms. James seek out a broader perspective, interviewing an adult with autism about his experience of the world, and did what I could to offer a parent's perspective. 

As always, I'd love your thoughts.

Yes, my friends, this is a pep talk

Yet another study showing that children on the autism spectrum have roughly the same mercury levels as those without; a family, for their 15 seconds of fame, pretends their son floated off in a makeshift balloon (I'm not even going to bother linking this), and H1N1 continues to send chills up the spines of everyone I know, parents or not.  

The truth is, we're in a good groove. "Mommy's happy," Isaac told me today. And then, "You look better." This because I have spent the last week fighting H1N1, trying by turns to rest, get some work done, and wipe down every surface I touch, which is harder than it sounds. But it's up to the fates at this point; I'm a petri dish, no matter how many bottles of hand sanitizer I go through.  And every day that passes without Isaac showing symptoms is a gift, and so we wait and see if we can all get through this unscathed.

"You look better." If I could bottle the rush of feeling those words give me and hand them out to every newly-diagnosed parent I know, I would. Four years ago, when we were paralyzed with fear and grief, and experts gave us an endless procession of dark looks, pamphlets and assorted laminated materials, I prayed (and I am not, I admit, a religious person) for my son to look at me, really look at me, and tell me what was on his mind. I prayed for him to argue with me, to tell me how he was feeling, to ask a question, to snuggle up to me in a movie theater, happily munching popcorn. Now, at age six, he's done all these things, and worn the 3-D glasses to boot. 

Now he lies in bed reading a pile of Arthur books before bed (six is about average these days), tells us when he's upset and needs a hug and asks everyone--even strangers--how old they are. It's not much, as social gestures go, but the first step is a doozy.  I am grateful beyond measure.

And yes, for the sake of clarity, he's on the autism spectrum; autistic if you prefer. Still is, probably always will be. We're not talking recovery or magical thinking here. His autism is a part of him, as much as his sandy hair, his brown eyes, his impish sense of humor.

This year I made a 3/4 year's resolution, which I've never done before, being the sort of person who never makes resolutions of any kind. It came to me partly because of the economy, and partly because the kid is so full of surprises lately. And it's this: don't give in to fear. In these dark, celebrity-obsessed, culture-of-fear times, I'm going to drop a little "Greatest Generation" wisdom on you from FDR's first inaugural address: "The only thing we have to fear is fear itself."  I'm not usually one for Serious Quotes from the Greats, but this one feels very personal right now, especially given the recent (ahem!) Autism Speaks video, which rivals Paranormal Activity for scaring the living crap out of people.

A box came from Amazon tonight. "It's my surprise!" Isaac exclaimed as J. opened it for him. Isaac took out the packing plastic, and then the packing slip (looking frankly a little dubious), only to find nestled beneath a pile of new Arthur books. He paused for a moment, not having yet been inducted into the mysteries of Books That Come in the Mail. 

"Where did they come out of?" he asked. But that's a question for another day.

Autism is a color

There is something about autism that taps into the most primal beliefs we have about the nature of consciousness, of intelligence, of humanity. There's a fairytale quality to the way the media portray autism, and I mean this in two diametrically opposite ways: both the happy/quirky/technicolor and the clammy/dread-inducing/Grimm's tales sense of the word.

Depending on who you believe, autism is an epidemic, a scourge, a pathology, a condition, a series of genetic variations, a difference, an asset, or all or none of these things.  There are as many autisms as there are people with autism. There are as many autisms as there are colors. There are as many interpretations of it as there are interpretations of the Constitution, of politics, of religion.

All these variables make people nuts.

I started this blog nearly three years ago because I wanted to reach out to families who, like us, started their journey in a cold sweat of fear, despair and confusion. I wanted to share what we've learned, and offer comfort and hope when I had the presence of mind to write it down.  I wanted to tell you about the weird, the painful, the hilarious and the joyous, and find out if anybody else out there was on the same wavelength.  I've met some of my best friends this way (you can meet a lot of them on my blogroll).

I know that our story will only resonate for some families, because all kids with autism are different. But even though all kids with autism are different, they are also sometimes the same: when they melt down spectacularly in public, when they struggle with something that "typical" kids understand innately, when they fight to regulate their senses, when they do something socially awkward, when they communicate--with a word, a smile, a spontaneous hug--their joy in the world.

I am not a sap about this. It's difficult. It's exhausting. It's frightening sometimes. It's bloody expensive. It's tough on my marriage, my family, my friends and probably my health.  

But I am happy. My son and husband are happy.  

So I reject you, Autism Speaks, for mongering fear and hatred with this hideous new video. For forgetting that people with autism deserve respect, and for demonizing them even as you seek to raise funds to support and treat them.

It's manipulative, hypocritical, counterproductive, cynical and, frankly, beneath you.

I'll tell you what. I don't know what life holds for Isaac, or for any of my friends' children. I want all the same things things everyone wants, and I won't stop working for it.

But what I demand for him, and for kids and adults on the spectrum, is respect. Yes, we need to raise money for treatment, understanding, respite care, research: all of those things.

But respect is free. So why is it so hard?

I'm baaack!

It's been a long summer, and an all-consuming one, but I'm back now. I'll save you the lengthy explanation: it was a combination of real life, of wanting just to be rather than say, and of wanting to spend every spare minute (of which there were precious few) with my boys. 

Here's what we did this summer:

• Isaac turned six, lost his first tooth and learned how to do a "forward roll" in gymnastics
• I learned how to make fried chicken 
• J. started on a long-contemplated book project

Oh and there was reading, and IEPs, and trips to the beach, and seeing old and new friends, and life in its many tiny textures.

I've missed you all.

Vocational services for adults with autism

I spent the earlier part of this week in Phoenix, where I attended the dedication of a room at a brand-new vocational center for adults with autism. It's part of the Southwest Autism Research and Resource Center (SARRC), and it gave me a peek into what's possible when people think broadly and imaginatively about what it takes to serve our community.

The center, called the Opus West Vocational and Life Skills Academy, provides training in daily living skills, vocational skills, as well as job readiness and placement services for adults with autism. Everything was conceived to support the students while maximizing their learning opportunities: a technology center, a rec room, "The Loft," an apartment-like series of rooms for socializing and life skills education, a kitchen and a garden where the students can grow vegetables which they will eventually harvest, make into soup and sell locally. There's even a "touchdown" area with tiny cubicles meant to help the students practice telephone conversations. It's a dream--quite literally--come true.

Closest to my heart, and the reason I was there, is a classroom called "Camilla's Crew," in which the staff offers vocational training to people with autism. The teachers assess the clientele--their strengths, preferences, challenges--and then work with them to develop the types of skills that will help them land and keep a job. 

Camilla is my cousin, and she'll be 14 this year. She's lucky to have this resource, which was developed on a foundation of so many collective years of experience, love, learning and success.

Stretch your normal

[Scene: ISAAC is at home with ANA, his nanny. She is trying to get him to eat his carrots.]

ANA: Isaac, papi, have a carrot!

ISAAC: No.

ANA: Isaac, come on these carrots are so good! [Eats one]. Mmmmmm!

ISAAC: Ana likes the carrots, Ana can eat the carrots.

And here we are. He walks into assembly at school now, completely untroubled. Months ago, he refused to go near the place with its linoleum floors, bright lights and deafening clamor. The anxiety is still there, as is the elevator obsession, joined by a new companion: buses.

These days, I awake as often as not to a recitation of our municipal bus lines. It's part of the deal, our special interest, if you will. It doesn't faze me too much--I remember my grand passion for escalators at that age--but then the world has a way of intruding into our snug little cocoon.

The world loves norms, doesn't it?

*

When my mother died, a part of me watched with detachment as I moved through the stages of grief--frequently all at once. But one thing people don't tell you is that your friends and acquaintances move through those stages with you as well. They have a timeline too.

They begin with shock, as we the bereaved do. Then kindness (sometimes distancing). Food is brought, hugs given, long weepy monologues patiently listened to. Assurances--"whatever you need..." are made. But then, at some predetermined yet mysterious moment, there is a shift.

You are supposed to be better. You are supposed to be back to normal. Because--let's face it--we humans are made profoundly uncomfortable by variations from the norm.

But the truth is that the bereaved accommodate as well. We try to pass. We pretend to feel better. We pretend to be back to normal. We simmer with anger. Or we express that anger.

Because then we have two things to battle: the grief, and the illusion that the grief is gone.

And this is where we are, in a way. As my boy matures, behavior that was passed off lightly at two or even four is now so much more evident. When he is overcome at school and lies on the classroom floor, or when he refuses to exit the elevator, demanding yet another ride, the climate shifts, and everyone has to accommodate themselves to this departure from the expected.

They want him to be normal, because, you know, it's so much easier.

But here's what I've learned. My normal has stretched to accommodate a lot more than it used to. And with that comes a certain serenity about what is happening at any given time. 

So here is my advocacy project, my challenge to you and to the people around you. If you really want to make a difference in my son's life and the lives of people like him, challenge that unease you feel. Provoke it. Stretch your normal.

Free Association

There's something about this kind of writing that seems sto express the way the brain works. I started this weblog back in February 2007, at a point when Isaac's speech had really begun to kick in and we were in about eighteen flavors of crisis about what it all meant. 

He liked to spin a lot then, and would often twirl or demand that his father or I pick him up and spin him around. "He never gets dizzy," people would marvel, as if he had accomplished something special. "Yeah, that's actually not so great," I'd say if I was in the mood for a little Sensory Integration 101.  "It means his brain isn't fully receiving the signal that his body is moving." 

Isaac doesn't spin much anymore, and when he does, he gets dizzy much more quickly. Those pathways--some of them, anyway--have found each other. 

I read an article by Stephen Johnson in today's Wall Street Journal about how E-Books will change the way we read, and I can already see so many of these patterns in the way I communicate.  I might be writing about Isaac and thinking about how, lately, he loves bus-riding, and it'll remind me of Ben and his recitation of all the Thomas trains. 

Or I'll be thinking about Nik and his unexplained pain, wondering why the medical world has so much trouble tracking down the source of something so powerful and debilitating. Or what GP or Leelo is doing today. Link, Link, Link.

It takes me on a journey, and if you're game, it brings you along for the ride, even if you don't choose to get off at every stop. It's not a hike; it's a meander, and you never know exactly where it'll lead.

And so, as I see my own world increasingly linked, I see evidence that my son's brain is developing associations as well; some good, some funny, some not so good. I see the unexpected joys in his particular neurological arrangement, and the pain as he crashes against his anxieties over and over again. They're always mostly the same, and sometimes a little bit different.

As J. remarked last night, Isaac is increasingly able to work through his feelings and come out the other side. It may not always be pretty, but bit by bit, those linkages are giving way to new and finer strands and tendrils and fronds and branches. More paths, more possibilities; the power of a network unfolding.

Like Johnson, I won't ever be able to give up the discipline and pleasure of a straight read through a big book: it's who I am.  But I can't help wondering whether there will be some evolutionary impact to this brave new link-rich world, and if we, and our kids, will be the better for it. 

Postcards from France

We had friends over last night, and talked, you know, about things.  One of the odd paradoxes we discussed is the fact that children on the spectrum (most children, actually) crave a sense of structure and like to know what's coming next. At the same time, our kids have a particular tendency to become anxious about transitions, even if they are transitions to something they dearly want.  So it is sometimes a delicate balancing act, the act of telling. Or you can call it by its real name: a crapshoot.

So I, uh, didn't really tell Isaac that we were going to have dinner guests. When the doorbell rang, he became a bit agitated, naming his regular babysitters in near-chronological order and insisting that it wasn't them. And it wasn't.

We set up the kids in Isaac's room with trains, cars and books, and, after a while, left them to play in proximity if not actually together. After a while, I heard a familiar pound-pound-pound down the hallway. One rosy cherubic face popped in, grinned, then another. Then pound-pound-pound down the hallway again.  And back. "We're chasing us!" Isaac crowed, clearly delighted with himself and his companion. I was so bowled over at the spontaneity that I couldn't have cared less about the pronouns. 

It didn't last long (which the downstairs neighbors probably appreciated), but it was progress. Oh, and I made Kung Pao Chicken.

*

If you're looking for two beautiful things to read this week, I recommend Paul Collins' piece in Cookie about how to include a child with autism in your birthday parties, and my friend Kristen's piece about what lies beyond awareness.

Off to the kitchen. Grandpa and Nonna flew in today from the East Coast (they hit the jackpot; it's a gorgeous 76 degrees here) and I am about to crack open a bottle of Albarino and make shrimp with snowpeas for family dinner. 

P.S. If you're wondering what the heck the title means, check out this post from MOM-NOS. Classic.

Here We Are

A year ago, I sat on a plane on the first day of Autism Awareness Month and watched five straight hours of CNN coverage. I remember being deeply impressed by the commitment of the CNN staffers, some of whom had children on the spectrum themselves.  

One segment was about a center in Qatar for children with special needs. A few weeks later, I received an email from a woman who'd read one of my posts. She lived in the United Arab Emirates and was concerned about her son; so much so that she contacted a stranger in the United States for advice. 

I didn't know where she was exactly, but I told her about the Shafallah Center in Qatar. To this day I have no idea whether they were able to help her, or if she even contacted them, but it reminded me of how small the Internet makes the world. With so little really known about autism, our kids' lives are deeply affected by information passed from one of us to another: in a word, folklore.

Here we are again: it's Autism Awareness Month, and we're going to be hearing a lot of folklore in the next 30 days. It'll be the usual drumbeat of causation theories, therapies, inspiring, grim and sensationalist stories and semi-celebrities flogging their books on Oprah. 

Makes you want to check into a hotel, throw a blanket over the TV and sleep for a few weeks, doesn't it?

*

Tonight as I tucked Isaac into bed, I couldn't stop thinking about the onslaught of autismania we'll be seeing this month. I looked down at Isaac as he sleepily clutched his stuffed bunny, and I thought if people really understood the incredible strength and beauty and humor of our kids, how hard they work, what the world looks and feels and smells and sounds like to them, we wouldn't have to spend so much time fighting for awareness, and beyond that, acceptance.

Enough Rain Man, enough sensationalism, enough scary and irresponsible stories. Enough. You've heard of autism: now look at the kids.

Here's mine. He'll be six this summer, he loves buses and pizza and reading and climbing, and he laughs when he learns new words.

Now. Tell me about your kid. Your brother or sister. You.

If you are on Twitter, I invite you to post a photo of someone you love with autism. At the end of the post, tag it  #waad (for World Autism Awareness Day) and #hereweare.

Here we are.

Some dark places, and a call to action

"It's getting light blue," Isaac commented idly as the first wisps of light began to peek through the window shades.  He hopped down off the bed, picked up his copy of Knuffle Bunny, and began to read. "Not so very long ago, before she could even speak words..." He read the book straight through, gazing intently at the pictures, and I let the music of his voice drift over me; rushing sometimes, stopping momentarily as he turned the pages back, carefully examined the pictures, and read them again.

"Why is Trixie upset?" I asked him at a certain point. He ignored me and kept reading, his attention fixed on the book.  "Isaac, look at me," I said, my voice a little louder than before. He looked me in the eye. "Why is Trixie so upset?" I asked again. "Because she lost her Knuffle Bunny," he replied calmly, and went back to reading.  

*

I first heard about the Ann Bauer article on from some friends on Twitter. "Sick to my stomach," one wrote, "Shaking," and I clicked over to see what everyone was talking about.  "For years I thought of his autism as beautiful and mysterious. But when he turned unspeakably violent, I had to question everything I knew," read the introduction, and I felt a heavy dread gather in my stomach.

Let me get this straight, so there is no misunderstanding. 

Autism is nothing if not mysterious, and it is as impossible for me to untangle my son's autism from who he is as it would be to imagine him a girl, or a teenager, or your child, or anyone other than he is now at nearly six years old. I do think his autism is beautiful because it's part of who he is, how he appreciates a pratfall, loves the music of words, devours books, tenderly kisses his stuffed bunny before bed.

And despite the fact that he's gentle and happy and bright, I would be lying if I told you I didn't wonder sometimes where this all will lead, and if he'll be okay.  I'm his mom.  It's my job.

Honestly, though, I worry less about him than I do about you. Well, probably not you exactly, because you're here and you're reading and, if this isn't your first visit, you know a little about our story.

I worry about the world, and people's conflicted and often hostile reactions to autism. Dennis Leary, are you listening?  

I worry because, if you read the comments to Ann Bauer's story, they start off compassionately, and then understandably begin to question, and then, slowly veer into judgment. They question her credibility, her reliability, her motives, even her sanity. Several people, who grossly overestimate the economics of online publishing, accuse her of trying to make a buck off her son.  And then they become ignorant and cruel and outright frightening, so much so that Salon actually ended up closing the comment thread. 

I worry because when you say "autism" some people turn ugly, and, what's worse, they feel justified in doing so. 

Ann Bauer did a brave and risky thing: she told a personal story that she knew would shake us up, and shake us up she did. And amid the praise for her bravery and candor, there was far too much blame and mud-slinging and ugliness. 

She didn't deserve that.

Whatever it is, to whatever dark corners our questions lead, whether this turns out to be one family's painful story or something else entirely, whether we are confident or slightly worried or frankly shit-scared, we need to listen.

We need to rally around the people who speak out, most particularly when their stories are the ones that are most unbearable.  Even if we leave with more questions than we had before. Even if it makes us sick to go to those dark places because that's what happens to other people who (we would like to believe, wouldn't we?) somehow deserve it.

We owe it to our kids--and to the adults on the spectrum who deserve our understanding and respect--to be better than that.

We need to be better than that.  

We need to be BETTER THAN THAT.

Whose disability is it anyway? Ask Aimee Mullins

I found this link over at parent hacks, one of my favorite haunts. It's founded (curated, you could say) by Asha Dornfest with a great deal of care and humor.  (Asha always finds the best stuff.)  

Today it's a link to a video from the TED conference; a talk by actor, model, athlete and activist Aimee Mullins on the nature of power, disability, art, poetry and prosthetics. 

It's a masterpiece.  Two of my favorite tidbits:

"Pamela Anderson has more prosthetic in her body than I do. Nobody calls her disabled."

"Poetry matters. Poetry is what elevates the banal and neglected object to the realm of art."

Intrigued? Watch it here.

All content and images courtesy of TED.