Welcome to Life, Animated

Our son Owen, like so many with autism, has an ‘affinity’—in his case, a deep connection to the Disney movies he’s watched countless times to make sense of an often-bewildering world. We wrote about Owen in Life, Animated, and received scores of letters describing affinities from anime to Minecraft to maps. That’s why we started this site: to share Owen’s story and to create a platform (the Autism Affinities Project) for others to share stories of their own.

We hope you'll join us in gathering and exploring the breathtaking range of expression -- impeccable renderings of movie scenes, intricate art, musical performances, stirring videos, and sheer feats of recall -- that affinities inspire. Here we will make them visible to an appreciate public.

Autism Affinities Project – Quentin

A few months ago, I met a woman named Melissa at a reading in New York City. She told me about her son Quentin, who has a surprising affinity: corporate logos. One of the first Autism Affinities Project posts was a video Melissa sent me of Quentin in their family’s kitchen, and I have continued to come to know him through the incisive blog Melissa writes about their life together, The iQ Journals: Adventures in Autism, Media, and Technology with a Boy Named Quentin. Today, I’d like to repost a piece Melissa wrote in April about a recent family vacation. Being uprooted can be difficult for any autistic child (even if they are a Disney fan headed to Disney World!), and Quentin’s affinity ultimately helped him “unlock” that message.

This past week was Spring Break for my children. Like so many other American parents, we ventured to take our children on a little vacation. This is the first real trip we’ve taken since our very successful trip last summer. And this is not the first time that I’ve noted that Quentin’s logo obsession seems to have an uptick on vacation. However, this time, the attachment to naming logos seemed to be at its all-time high, and it came with a lot of negative energy on Quentin’s part.

Q planeWe were visiting my parents in Sarasota, Florida. This is a place that my children have been before, albeit not for a long time. I did not do nearly as much prep for this vacation as I have in the past. I did not make a social story about it, for example. Or show him any pictures that resembled a schedule. Quentin knew that we were going on an airplane, as we told him over and over again and he would get excited. But, I think he was unprepared for the week due to a lack of social story explaining who we were seeing and what we would be doing. (Of course, I understand this now in retrospect, but was too busy before the trip to do anything about it.) I am now beginning to think that his demands for naming logos throughout the trip were most likely a response to being out of routine. They came with a kind of anger and sadness.

First, let’s start with the obvious. There are a LOT of logos between New York City and Sarasota. We’ve got the car ride to the airport – filled with logos of stores and shops, signs, etc. Then there’s the airport itself, filled with airline logos, food vendors and newsstands. You would think we’d get some peace once we were in the air, but then there’s the fabulous televisions behind every seat on JetBlue, where Quentin had free reign to change the channels to find more. Even the information card in the seat pocket is filled with logos of snacks and drinks. Once we landed, Quentin had the gleeful experience of seeing every car rental logo known to man at the Tampa airport, followed by a car ride to display all finest logos from Tampa to Sarasota. When there were no logos around, Quentin would read the makes and models of the cars on the highway next to us. It was a long trip of logo-reading.

Let me be more explicit about what happens when Quentin sees a logo. First, he points and reads it. Then he keeps repeating the words until someone else repeats it back to him. If nobody repeats the logo (or words) back, he often has a tantrum. So if we are in the car, for example, it’s impossible to have a family conversation at all. Quentin dominates our family car rides. We sometimes let a tantrum ride itself out just to share important information, but otherwise, Quentin dominates our togetherness. It leaves us all very exasperated.

Here’s what it looked like while we were driving around. (Click here if you don’t see the video below.) Fiona helped him by repeating the logos he saw, to the best of her ability. As you can see, his words are not always easy to understand.

Usually, it was not this peaceful. Quentin was more agitated. When we arrived in Florida and it got late, he said to me, “I want home.” My heart sank. It’s at this point that I realized he didn’t understand that we were on a vacation at all. He didn’t realize that we traveled all day and we would be sleeping there, for several nights. He went to bed very upset that night.

Throughout the week, the logo-naming increased. He found them throughout my parents’ home, especially on their widescreen TV. He also started to spout logo names sporadically, without even seeing them. “Clorox,” he would say to me, with perfect eye contact, waiting for a response. “Clorox,” I would say. He would counter with, “Pringles,” again waiting for my response. “Pringles,” I would say. For Quentin, this is typical back-and-forth conversation. We could go several rounds of brand names before he got tired or distracted.

I noticed that he kept saying, “24 hour locksmith” a lot. This is not really a logo, but a group of words. It is familiar to everyone in our family, because comes from a sticker that someone slapped on the buzzer of our apartment in Brooklyn; it must have been placed there by an eager locksmith ready to make some money if someone accidentally got locked out. Quentin adores that sticker and reads it every time we leave or re-enter our building. It’s one of those phrases that we are asked to repeat all the time for Quentin, so we all sort of tune it out. But this time, on vacation, Quentin asked for us to say this logo a lot. Slowly, eventually… it occurred to me what Quentin was actually trying to communicate. When I figured it out, I confronted him about it. “Yes, I hear you: ’24 hour locksmith.’ That’s on the front of our building in Brooklyn. Does this mean you want to go back home, Quentin?” “Yes,” he replied quickly. He had no other way to say it, so he was saying it with a logo.

The vacation was not all about logos, of course. Quentin did experience some very happy moments during our time there. One of those happy moments was going on the “Air Grover” roller coaster in Busch Gardens. Fiona and Quentin went on that roller coaster several times; they have a shared joy of roller coasters.

air grover

Quentin also loves to swim; we enjoyed the pool several times while we were there.

Q swimmingWhile there were some joyful moments, Quentin always came back to his logos during our trip. They are predictable – a known entity for him. When we arrived at home at the end of our vacation, Quentin seemed very relieved. The need for logo-reading and repetition slowed down. He could relax in his familiar surroundings and enjoy our home again.

I am learning that Quentin uses logos to communicate ideas he cannot really say. He holds on to them as comfort. He sees them as familiar friends in places that are unfamiliar. I am constantly trying to experience them as he does. They are not just words and symbols that advertise; they evoke feelings or places or times for him. I am trying to learn his language, just as he is trying to learn mine.

 Update: Since originally posting this, Melissa has compiled an amazing list of key moments in her understanding of Quentin’s affinity. Check it out here!

Autism Affinities Poll

In April, the New York Times reported that researchers from MIT, Yale, and Cambridge, inspired by Life, Animated, are teaming up to study the effectiveness of structuring therapy around a child’s affinity. This was thrilling news, and research we will watch closely. But (as anyone who has ever suffered from a chronic condition knows well) scientific research is slow to unfold. And our curiosity on this front–bolstered by your curiosity in the form of countless letters–is strong!

As such, Dr. Dan Griffin (Owen’s longtime therapist, with whom we devised exercises like ‘Educating Zazu’) and I came up with an informal poll to complement the formal research that is soon to be underway. Through it, we’re hoping to get a sense of who else out there has had experiences like ours with Owen. We ask questions about your child’s passions, and about how others have responded to those passions. We’re hoping this will give us a richer sense of how affinities operate in individual lives that will assist us in better documenting and channeling those affinities in the future.

You can access the short survey here:

All information will be kept completely anonymous, and we won’t use your e-mail for any purpose other than to share our results in the coming months.

If you have any questions, please feel free to direct them to suskind [dot] lifeanimated [at] gmail [dot] com!

Many thanks, Ron & Dr. Griffin

Autism Affinities Project – Gabriel

A few weeks ago, Antonia, the UK mother of a 5-year-old with autism, wrote to us to say that she was struck by the similarity between Owen’s story and that of her son Gabriel. If Owen’s cinematic sweet spot is Disney, Gabriel’s is Tim Burton–specifically Frankenweenie, Burton’s 2012 film. Last December, Antonia wrote about Gabriel’s fascination with Frankenweenie in a beautiful essay titled “Sparking Connections” (the film’s canine protagonist is named Sparky) for Picturehouse Blog that drew the attention of the film’s screen writer and producer. (In it, she describes “the moment,” during Gabriel’s first viewing of the film, “many clinicians and educators were proven wrong” about her son’s emotional capacities.)

We highly encourage you to read Antonia’s words for Picturehouse and then to continue on below, where Antonia shares how her family has harnessed the power of Gabriel’s affinity since then. (The Film Club she founded for Gabriel holds particular resonance, as Owen’s Disney Club held its final meeting this weekend, with Gilbert Gottfried and Jonathan Freeman in attendance as surprise guests. Owen graduates from Riverview this weekend.)

The Alchemy of Affinity

Francis Ford Coppola described cinema as ‘a kind of alchemy,’ and when my son discovered Frankenweenie the magic was tangible. We’d been using film as a social mechanism for Gabriel since 2011, 18 months before his diagnosis of autism. Yet it was with the release of Frankenweenie that Gabriel’s affinity for film really grabbed us by the throats and poked us in the eyes – Gabriel made sure we really saw who he is and what he is capable of. Please see the accompanying short blog [referenced above] to read about our epiphany, courtesy of Gabriel, Tim Burton and Disney!

Since Frankenweenie, what I’ve called ‘film therapy’ has infiltrated every part of our lives – schooldays, weekends, evenings, car trips, holidays, meals, bath-time, swimming sessions and more. I started simply by asking 4 cinemas if they’d donate old film posters. 3 obliged and I got them laminated. We began by poring over them like treasure maps, revelling in Gabriel’s eye for detail (he’d spend minutes focusing on details that had passed me by) and with me animatedly commentating. Gabriel couldn’t talk, but his eyes could, and they lit up as I exclaimed – ‘Oooo, it’s a scary bat monster!’, or ‘Fish! Just keep swimming, Dory!’, or ‘Look out! Shaaaarrk!’, or ‘Bird! It’s a blue bird, Gabriel!’ Continue Reading

Autism Affinities Project – Trevor

Meet Trevor. Trevor is a 13-year-old spectrum kid whose knowledge of hockey surpasses that of just about anyone, including his dad, Russ, who works for the NHL. Russ has documented his family’s life since February 2012 on a blog entitled Pucks and Puzzle Pieces (the blog is pseudonymous, but we use the family’s real names on this site with permission.) In the below video he talks to Trevor, who says it’s “pretty cool” not many people can do the things he can.

Recently, Ron caught up with Russ while he was on the road promoting the Stanley Cup to speak to him about Trevor’s skills and the task of creating a world that recognizes and responds to those skills.

A few snippets are below, and you can read the full interview after the jump. Throughout, we link to Pucks & Puzzle Pieces posts, which describe many of the events noted here in more detail.

Russ: We’d taken him on some errands, which is never an easy thing to do. We’d rewarded him at the checkout, for good behavior, with a pack of hockey cards they had there. We got home, and there were these games we liked to play with hockey cards, like War: Who has the tallest player? Who has the player with the most goals?

Trevor said, “Quiz me on these.” The cards we’d bought that day were different in that there weren’t any stats on them. There was an action photo on the front, and on the back they had a description of the game where that photo had been taken. And it said, you know, “This goalie made 37 saves in a 5-1 win on such and such date,” and they were from the previous season. I said, “I can’t, there are no stats.” He insisted, “Quiz me on these! Just don’t tell me the date and the score.” So I start quizzing him, and he responds “5-2, December 12th!”

I go through this whole pack, and there were 40 or 50 cards, and he got all but one of them right. I just thought to check the one he got wrong, and, of course, the card was wrong.

[People say] “Why is this kid always talking about hockey? Why is he socially awkward?” …To see it in the field I work in, where I could have somebody with this kind of knowledge to look at what we do every day, and save us from a million mistakes, it’d be incredibly valuable.

[Trevor] could be perfectly suited for some sort of job as a fact checker, but maybe he doesn’t navigate the interview because he doesn’t make eye contact or he can’t sit still. We need people to recognize that you’ve got to get beyond the exterior to what’s on the inside, because there’s so much value there, and so many different types of people from so many walks of life who aren’t even getting a look because they don’t present according to the model we’ve all grown up accustomed to: firm handshake, eye contact, all that stuff.

I was able to take Trevor to visit his favorite team, the San Jose Sharks, this season after a practice. I watched this, and it reminded me of the time you took Owen to the Disney studios for the first time. He grew a foot before my eyes. He stood straighter. Here he is, meeting his favorite player, Joe Thornton. It was a brief exchange, but there was no stuttered, awkward conversation. He fit right in. He was among his people, his hockey people, and he knew that there was nothing different about him in this crowd. Watching him interact with these players in a way that was so much more at ease than he is with his peers at school was breathtaking.

Continue Reading

Autism Affinities Project – Art by Dylan

Dylan is a young artist with autism whose vivid paintings caught our eye after an exchange on Twitter. We especially can’t stop staring at his sheep, who looks like Kandinsky’s ‘Color Study – Squares and Concentric Circles (1913)‘ engaged in some rapid mitosis and grew legs. Below, Dylan’s mother Shara was kind enough to share his story with us.

Artbydyl_collage

Dylan was diagnosed at 3 with PDD-NOS, mostly because he didn’t speak. Of course he failed all of the language-based tests!  He was happy and active, reached all the milestones that as a new parent I monitored weekly if not daily, except for language. I started teaching him sign language to help him communicate without screaming and crying (me too).  From the moment he could hold a crayon, he was drawing.  Most often the characters were from the Disney Classics, Silly Symphony cartoons and the MGM production logo.  Over and over again. We watched Fantasia, Dumbo, Lady and the Tramp, The Jungle Book and of course The Little Mermaid, Beauty and the Beast and Aladdin too many times to count, from beginning to the very end and some scenes multiple times.  Buying bulk paper at Costco and giving Dylan a never-ending supply of drawing tools was sure to give us a pathway into his world.  What Dylan couldn’t say he drew.  Without a single word, we knew what he was feeling, thinking and dreaming about.  I have every single sketch digitized so that I am not the next feature on Hoarders.

Dylan was enrolled in public school which offered all the services he needed.  Supposedly he would be in a regular classroom with “normal” kids and get pulled out for therapy.  Each year it seemed that his time in the regular classroom was less and less.  By fifth grade, Dylan spent 90% of his day in a special education classroom doing basic math and reading board books.  “He just doesn’t seem to get it,” the teacher told me.  I was then approached by the principal about the standardized testing and how an adult would take the test for Dylan while he sat nearby, “the school needs the money.”  (The principal was removed from that school shortly thereafter.)  A few expletives later we left and Dylan was enrolled at his current school, DLD Sycamore.  This school has a 5 to 1 ratio, no one gets left behind.  We also enrolled him in Kumon math and reading.  The owner wasn’t sure that a child “like Dylan” would be able to progress in the Kumon program.  Holy smokes, don’t tell me no.  Today, Dylan is on the Kumon honor roll in both subjects for three years running.

Two years ago he was evaluated again by the Center for Development and Disability at the University of New Mexico.  This time, his diagnosis was the full Autism 299.0 diagnosis.  That didn’t change anything for us.  Dylan has his routines and it’s a bit of a struggle to change the schedule.  He gets anxiety about random things so we’re learning to diffuse that.  Dylan has a lot of energy so he swims, kayaks, rides his scooter and has a nightly WWE throw down with my husband.  Most of the time he sits in his room where he is surrounded by thousands (if not millions by now) of Legos, Disney VHS tapes (we’re the only ones I know with a working VCR), plastic bath toys from all over the world (he loves eBay), paper and paints.  According to Dylan, “drawing and painting relax me and my body feels good.  I see the colors, all of the colors, and I am in the painting.”  And that is why I started the blog.  I wanted to share Dylan, mostly with friends, but now his art has been seen in thirty-four countries.  The power of social media!
That’s probably much more than you wanted to know and I could go on and on about his love of Doritos, Poore Brothers Salt and Vinegar chips and turkey bacon, water and SpongeBob.  But here in the Land of Enchantment it’s dinner time.  The troops are hungry.

Shara, from one member of the “working VCR club” to another, it’s a delight to hear about Dylan’s life. His story highlights much we encountered over the course of Owen’s education as well, including the paucity of traditional metrics for evaluating the unique strengths and weaknesses of our children and the power of drawing to draw them out.

To learn more about Dylan’s art, including a massive mural he completed, please go to artbydyl.com.

(We’re thrilled to receive submissions to the Autism Artists Project. We will continue to search out stories of talented artists with disabilities online, and we hope you will continue to send stories to us as well.)

 

Autism Affinities Project – Tyler Doi and Woodstock Chimes

Sometimes affinities cluster around familiar themes (anime, maps, Disney.) Other times, as in the case of Tyler Doi’s affinity for wind chimes, they are delightfully idiosyncratic.

In this video, see what happens when Tyler steps outside of his room, with its vast collection of chimes, and into the headquarters of Woodstock Chimes, whose collection is even vaster. (Woodstock, we learned, is the largest manufacturer of wind chimes in the world.) I don’t want to reveal too much, but there’s even a “Name That Chime” challenge between Tyler and Woodstock’s leader, the affable Garry Kvistad.

Reflecting on Tyler’s deep affection for the slight shifts in tone between each chime, Garry notes: “He can hear more than what most people can hear in a sound, because he’s inside of it.” Of course, this is something Alison and Sean Doi, Tyler’s parents, long understood, and rang true to us as well.

In particular, upon hearing Tyler’s story we found ourselves thinking about the time Owen met Don Hahn, who produced Beauty and the Beast and The Lion King. Ron wrote about this in Life, Animated:

Owen talks about his first call with Jonathan, how he told him Aladdin was about “accepting who you really are, and being okay with that,” and Don tells him that for each movie, they post the main idea above the drafting rooms to inspire the animators: ”Don’t Judge a Book by Its Cover” for Beauty and the Beast; Remember Who You Are” for The Lion King. All I can think of after this exchange is how Owen’s interpretation, what he sees, goes so much deeper.

“You’ve figured us out—it’s not fair,” Don laughs. But, in a moment, he sees it, too: “You see so much more in these stories than most people.”

“People with autism are everywhere, and they need to be appreciated for what they can contribute to the community,” says Jamey Wolff from the Center for Spectrum Services, who is featured in the video. We couldn’t agree more.

What stories like Tyler’s, Owen’s, and the others featured on this site make clear is that those contributions can be immense, sometimes even beyond the mental reach of neurotypical people. Why? Because those with autism often, as Don Hahn put it, “see so much more” in their areas of interest than neurotypical people.

We’ll say it again: Those with autism often “see so much more” in their areas of interest than neurotypical people. (Or hear so much more, in Tyler’s case.)

As a result of their encounter with Tyler, Woodstock Chimes developed Chimes for Autism, 100% of the net profits from which will go to autism research and treatment– “and we’re very proud of that,” says Garry.

So are we. Contact between these two worlds can be transformative. We hope more and more people will continue to realize that, and fewer and fewer people with autism will be left behind.

Autism Affinities Project – Larry

“We are all differently skilled.”

So says Larry, an autistic man thought to be nonverbal until he was given a facilitated communication device. “He was silent for over thirty years,” says his sister.

Featured in this National Geographic video, Larry was institutionalized at age 8 and suffered physical abuse from which he still bears scars. Throughout that time, and into the present, art was a refuge for Larry.

At 20, his sister brought him home to live with her, and since then he has  contributed substantially to the family—National Geographic, for example, shows Larry cooking and bringing a pot of goulash to the table with gusto. It’s an important reminder of the impact genuine care and connection can have the lives of those with autism and other disabilities.

Autism Affinities Project – Stephen “The Human Camera” Wiltshire

Stephen Wiltshire, in short, draws the world with a precision that would boggle most neurotypical minds.

He didn’t speak his first word until he was five…When he was eleven, he drew a perfect aerial view of London after only one helicopter ride. Even the number of windows in all the major buildings in his drawing was correct.

Watch what happens after Stephen views Rome from above:

“Despite our doubts,” the narrator says, “Stephen has drawn one of the most complex buildings, the Colosseum, accurately.” Our favorite part of this clip, which comes from a longer video, is not till the very end, when the video abandons its suspenseful tone (“Will he draw it accurately?”) in favor of listening to Stephen’s own thoughts on the process.

This year, Stephen turned 40, and is supporting himself through his artwork. He is an incredible model for how those with autism should be encouraged to cultivate their talents.

Moreover, Stephen’s story makes clear, in contrast to a reigning argument about savants, that those with autism often have genuine creativity. Stephen is able not only to copy existing landscapes–a remarkable skill in itself–but to draw landscapes of his own devising, such as the ‘Globe of Imagination’ shown below midway through its creation in 2013.

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Autism Affinities Project – Blackstock’s Lists

Gregory Blackstock is a sixty-something Seattle-based artist with autism. His art takes the form of meticulous catalogues of items in a type, whether “The Cauliflowers” or “The Law & Order Authority Vehicles,” “The Spatulas” or “The Great Italian Roosters.” (In an earlier post, we wrote about David, a boy from the Netherlands who takes a similar approach to drawing, but with animals.)

Many of Blackstock’s works have been compiled in Blackstock’s Collections: The Drawings of an Autistic Savant, which we highly encourage you to pick up. Additionally, a few years ago, Brainpickings produced an excellent write-up of Blackstock’s work.

 

The above is a frame of a video of Blackstock speaking about an exhibition in which he took part (the wonderfully-titled “Memory in the Arts”) while wearing a shirt printed with one of his designs.

For 25 years, Blackstock washed pots and played the accordion to support himself– all the while attending to his art. We’re so glad his work is now being celebrated.

Autism Affinities Project – Jake Barnett

Of Jake Barnett–a math prodigy with autism on track to begin doctoral studies at age 14– Morley Safer remarked: “he may not be the tallest student on campus, but he’s surely one of the brightest.” This 60 Minutes video (not embeddable, unfortunately) was posted in 2012 but is very worth revisiting for its striking demonstration of autistic aptitude. Here’s another demonstration of Jake’s aptitude– a fragment of the equations he writes over any available surface (even his bedroom windowpanes):

Jake with equations

Like Owen, Jake underwent a period of regression around his third birthday, losing his ability to speak. Over time, his parents noticed that math (contrary to the typical response it provokes!) made Jake feel at ease.

As 60 Minutes recounts, “By fifth grade, he dropped out of public school, and just to show that he was ready, taught himself all of high school math in just two weeks.”

What does Jake think about his autism? As he said to 60 Minutes, “It’s the reason why I care. Otherwise, I wouldn’t have gotten this far.”

The notion that children with autism can genuinely “care” about anything, given how much they often struggle with empathy, has traditionally been anathema. As the stories of Owen, Jake, and many others tell us, though, those with autism have the same desire to connect as any other person– they just may do so in ways that initially appear unorthodox.

Here’s Jake at TedXTeen:

We can’t wait to see what’s next from Jake.