autism

The value of seeing differently

Posted on by amberhj

“Anisometropia” sounds like a mythical city built out of licorice, but it’s actually a vision condition that Stella has dealt with all her life in which the eyes’ refractive powers differ. On Friday, however, we picked up her new eyeglasses in which the prescription is the same in both lenses. This is the first time that her eyes are piecing together a “3D” view of world unimpeded by the obstacle of disparate levels of magnification.

Wearing her new glasses over the past day, she is noticing that small type is fuzzy. She hates it. But just like when she first wore glasses at 18 months old, we were told to allow a two- to five-day adjustment period before worrying that the new script is wrong for her. The hope is that after the brain has a chance to adjust to new visual information, and small muscles change their habits in response to different focusing requirements, the view becomes clearer with less effort required.

During our last optical shop visit, Stella told me as we waited for service, “My vision is sharp as a hawk, mom. I don’t need new glasses!” I launched into an impassioned explanation about anisometropia and her borderline amblyopia how this moment was a big deal–getting glasses with the same magnification for both eyes, finally! I did this because facts sway Stella more than platitudes, and because I needed to kill time while we waited as Stella was a bit agitated. Nothing is simple or easy, but many things are amazing. Someone with her prescription wouldn’t be expected to have great stereoscopic vision, nor see everything so clearly. But she does. It’s just an excess of “near work” that causes issues. It’s just hard to be farsighted, comfortable looking up at the horizon, in a heads-down nearsighted world.

Stereoscopic vision depends on the ability of the brain’s visual cortex to bring together the eyes’ different views of the world, using the similarities and discrepancies to make sense of distance, depth, etc. But what if the two images are so different that they don’t share a point of reference? What if one is more blurry than the other? What if it’s not automatic and takes conscious effort to see in three dimensions?

Great-great-grandfather of the Oculus Quest, the Brewster-type stereoscope circa 1870. Source: Museo Nazionale della Scienza e della tecnologia Leonardo da Vinci, Milan.

Every day last year, Stella came home from school with a headache. So, in every IEP meeting, I would try to remember to mention her vision: severe hyperopia, anisometropia, partially accommodative esotropia. It’s easily overlooked given how smart she is, and it’s overshadowed by the social-emotional challenges that snowballed in the context of an un-inclusive school environment designed to support neurotypical kids. Yet it’s undeniable that due to her vision alone, without regard to any other differences, Stella has had to work harder than just about any- and everyone else. She has contended with double vision at times, as well as pain and fatigue from reading off a screen or paper all day. To say I’m proud of how she perseveres is an understatement.

I noticed that after Stella listened to a book on her Kindle, she remembered every detail. At school, I was told at some point that she often doesn’t really retain key information from reading. Autism or working memory was cited. I suggested that maybe it’s because her eyes aren’t the most reliable way for her to take in information.

It’s so simple, yet so revolutionary, to suggest that people favor not only different ways of gathering information from their world but also prefer different types of information, flat out. And that this is okay. That’s the premise of neurodiversity. It makes sense that for most of humankind’s existence, neurodiversity was a given, so central to our daily life, our survival and our ability to thrive, because we lived in relatively small communities. I’d like to suggest that communities can be thought of as brains, each person with a different role or niche contributing to the functioning of the whole, just like different parts of our physical brains have different roles and niches contributing to our own overall functioning. Sure, there’s some overlap. Some people have similar skills. Some parts of the brain can pull double duty or pick up the slack when another part of the brain falters. But diversity is innate, and vital.

Today, most people are no longer enmeshed in communities, sharing the load of daily existence. By and large, there is no divvying of roles, no playing a day-to-day part in a living community “brain.” That makes life harder for most neurodivergent humans, with our spiky skill profiles. When your brain so heavily favors certain types of information and tasks over others, it’s hard to cover all the bases every day–from maintaining homes, careers, commitments, social connections and family relationships to saving receipts and making returns in time to remembering to sign up and actually signing up your kid for summer camp ten million months in advance or, I don’t know, contending with the Sisyphean task of figuring out what to make for dinner and then actually making it, step by step.

Some autistic and other neurodivergent people may struggle with certain aspects of daily life, while also noting and bringing to light details and connections that others overlook. Again, we’re all simply gathering or emphasizing (slightly or dramatically) different types of information from our surroundings. This is helpful in a community “brain” scenario. If everyone sees the world differently, and connects back to the group, we get a fully dimensional view of the world with more depth, color, detail, and perspective than we could ever get on our own or among those who are likeminded. That’s how civilizations are built. That’s how innovation happens. That’s humanity at our best. This holds true in any place where people come together in pursuit of a common goal or interest–neurodiversity, racial and gender diversity, and disability inclusion are all proven to boost business performance, for example.

Within social movements, most notably civil rights and women’s suffrage, there lies another take on the importance of diverging points of view coming together to bring new ways forward into focus. Having a so-called “militant,” more aggressive force–I think of Alice Paul or Malcolm X–within a greater movement can enable progress by highlighting the hypocrisy of a mainstream that demands nonviolence and yet is underpinned by violence itself, while in comparison making the more peaceful activist groups seem credible or “reasonable” to the reluctant majority, who otherwise would outright reject them.

Due to racism, sexism, and ableism, we value the perspectives and contributions of certain people over “others.” As such our entire society is afflicted with anisometropia. We can’t see all the beauty of the world, all the wonder, all the opportunities–because our field of view is limited. Stereoscopic vision requires that we not only take in what’s right in front of us, but what is all around us. (Our periphery is, ironically, central to our vision.) I think of the misguided souls who took part in January 6th insurrection and how ugly the world must seem to them, how much of the picture and possibility of our country they’re missing.

Miraculously, Stella never dealt with full-on amblyopia, a common outcome of anisometropia wherein the brain just can’t use both eyes together. The inputs are too different to reconcile, and over time one eye is tuned out in favor of reliance on the vision of the stronger eye. She likely avoided it through years of part-time wearing of an eye patch, vision therapy, and reliance on her bifocals. A lot of work. Interestingly, paradoxically, and perhaps relatedly, Stella has off-the-charts visual-spatial intelligence–now there’s a parent brag you probably haven’t heard before.

Little Stella rocking the Quoits Vectogram during a vision therapy session, years ago.

When toddler Stella’s vision issues were discovered, long before her autism diagnosis, I was fearful and unsure about where her visual abilities would land and how her life would be impacted. I sought peace of mind in the fact that of the many unique human vantage points that inform and elevate the collective are those who are amblyopic or otherwise visually impaired. A surprising number of history’s most celebrated painters were amblyopic, likely helping to explain their talent in capturing and translating the feel of a three-dimensional world in a two-dimensional medium. I did not expect Stella to be some sort of artistic genius or “savant,” but knew she could find her place and hone her strengths. Not just in spite of challenges but partly because of them and the unique view of the world they inform. I believe that now more than ever.

I’m eager to see Stella’s headaches subside and her comfort increase as she adjusts to her new glasses. We’ve come a long, long way from her early bespectacled years. I’ll never forget the day, after continually taking off her frames, she yelled, “I’m too big for this!” and snapped them in two. Message received, I never let her outgrow another pair of glasses. Pants and shoes? That’s another story altogether.

I’m excited to see how Stella’s self-driven life will continue to unfold in light of all she’s overcome and with the unique perspective she brings to every moment. Social expectations don’t guide her. Stella’s path is all her own, in a way that more conventional thinkers and neurotypical minds can’t really fathom. While it can be hard to navigate outside many of the guiderails of expectation, this form of freedom can also be a gift. I hope it will eventually feel that way for her.

Zooming out further, I’m stubbornly and cautiously optimistic that everyone’s lives, including hers and all those who are neurodivergent or disabled or otherwise different, can continue to grow richer and expand into their full potential. As we come to appreciate different points of view as not only valuable but essential, we can move beyond merely “seeing” and instead make sense of and discoveries within the world, appreciate deeper meaning, solve big problems, and realize greater purpose.

I now realize that my vision has improved along with Stella’s over the years. Nothing is simple or easy, but many things are amazing. You just have to be open to different ways of seeing.

The risk and rewards of giving a flock

Posted on by amberhj

If you’ve ever kept chickens, you understand life’s imperfect trade-offs of risk and reward in a more intimate way than most. And if you’ve ever medicated a chicken, you understand the delicate tipping point at which fear-fueled fight-and/or-flight teeters into resignation to fate. There’s something eye-opening about caring for a living creature so different from yourself.

We have five chickens, down from six after losing one of two Black Minorcas. In a gross turn of events, all needed to be dewormed early this summer. Turns out occasional worm infestation is a natural occurrence for many animals and a cost of freedom for chickens. Part of opting for quality over quantity of days and months and hopefully years. Exposure to the glories of sun and soil and air and grass, as well as the threats of bacteria, viruses, and attacks (oh my) from wild birds and animals. That’s the choice we made for them. Really, it was the choice I made because after the first visit from a robustly healthy red fox with loads of casual confidence, who lounged by the coop one morning as if expecting a waiter to appear with a cocktail and hors d’oeuvre, Stella wished to keep them locked up for their safety and her peace of mind. We had many discussions about the pros and cons of captivity for chickens, and never quite saw eye to eye.

As far as I can tell, a good life for a chicken unsurprisingly centers on a form of self-determination. It’s the ability to forage freely as part of an interdependent flock, and little else. It’s certainly not found in days spent standing in shit, whining and pacing. I know a thing or two about the human version of that.

One of our chickens, a Welsummer named Brownie, is so hard to lay hands on that during one pursuit, Stella brilliantly suggested we turn this chore into an actual sport. The thing is, this particular chicken never, ever seems panicked like the others. Just calm, focused, utterly determined, and highly skilled. Truly, Brownie could put the NFL’s most elusive running backs to shame. We’ll have her cornered, only for her to defy gravity by deftly leveraging wall-as-vertical-launchpad. You bend down, thinking you have her, at which point she will go up and over your useless hands with a quick ping-pong maneuver. Or she’ll pull a lightning-fast nutmeg and leave you in her dust, red-faced. Smooth as butter, easy as pie. That’s classic Brownie.

Out of desperation and exhaustion, we use sunflower seeds to entice and distract the birds, effectively luring them into a frenzied heads-down treat fest. It works or at least helps, most of the time, on all but the remaining Black Minorca named Floppy. She is Brownie’s polar opposite, such a flighty, untrusting bird. I struggle to categorize her as a “domesticated” animal, because she appears scared, wild, and wide-eyed at all times. In keeping with her old Spanish breed, she’s lean and aerodynamic, thanks to sleek black plumage and crackling, electric nerves. Floppy was named in a nod to her large, waving red flag of a comb, which flops over to one side, higher in the front and stylishly low in the back, a red beret on a soldier whose default mode is manic, all-out retreat. She is not brave, has zero dignity, but is impossible to capture.

The other Black Minorca, named Biggie and taken too soon by a fast-moving illness of unknown origin, did have courage and perhaps an inkling of a chicken version of dignity. It’s probably what did her in. She once flew up to the edge of the roof of our house. Claws raking and clacking against the metal flashing, she almost landed the ultimate perch up there, in outer space.

Biggie could also be found out on the sill of the window in front of my desk as I worked, side-eyeing me from outdoors like a peeved middle manager. Her fiery comb was huge, bright, and straight, and she was at least 20% larger than her Black Minorca sibling and all the other birds, from chickhood on. When an ailing raccoon languished like a furry drunk in the small creek bed beyond our back fence, Biggie did not leverage her apex status within the pecking order to lead the girls to safety. She stood at the fence and shrieked as if outraged at the raccoon, with the flock of her followers chiming in from behind her. It’s no wonder she was the first to go, but what a legend among hens.

Stella loves these insane chickens fiercely. She counts all five (six before the loss of Biggie) as members of her menagerie, which also includes her rescue dog Kansas, a mix of Border Collie and Corgi, and a Netherland Dwarf rabbit the color of chocolate and peanut butter, whom Stella named Reese. She observes the chickens closely, studying the emotive qualities of their changing noises and quirky behaviors in an attempt to understand. “What do you think she means by that, mom?” Sometimes I detect worry in her questions, sometimes pure amusement.

I have begun to think our flock was a well-intentioned mistake. Initially I thought it would be so fun and a source of daily interest and helpful work for Stella, perhaps even an added sense of purpose. But she is so attached to them, so worried about their wellbeing, that at times it feels like a trap. Like I’d set her up for a certain heartbreak, six times over. Stella’s depth of connection with animals, I realized, would make the loss of these feathered aliens more painful than I, decidedly not an “animal person,” can understand. She already lost two grandparents over the last couple years, moved across the country, and went through hell at school, barely making it through this last year.

We lost Biggie so suddenly. She became lethargic one morning, her once proud comb wilted, sickly pale, and blotchy–and died the very same day. Yet Stella handled it with more grace than I ever would have expected. She connected the loss to a graphic novel she’d read about a misunderstood witch who buries roadkill to ensure the animals’ peaceful transition to the next life. I would find out later that here were indications, in Stella’s writings at school, that the death weighed heavily on her.

In the aftermath, there lingered the possibility that whatever killed Biggie was highly contagious and the rest of the flock could follow. About a month after Biggie’s passing, all seemed well and I stopped worrying. That’s when our Crevecoeur named Bex, with her ridiculous poof of black plumage as signature look and anti-Darwinian vision impairment on top of her head, started “gaping,” seemingly gasping for air or struggling to swallow. Stella thought it looked like yawning. I knew it wasn’t. Could it be the same mystery ailment that took Biggie? Bex is Stella’s favorite chicken. Of course.

Coming out to open the coop in the morning, I would notice Bex with her back to the rest of the birds, standing like a statue in a world of her own, wind tousling her poof. This forlorn and ponderous chicken of French origin seemed to stare out into the woods mulling the futility of it all. No longer in sync with the shared flock mind, but contemplating the shrinking of one’s world that is prompted by the gaze of the other–what a truly disorienting realization for a chicken. I suspected gapeworm, but hoped for an existential crisis. I placed an online order for Sartre’s “Being and Nothingness” and a goat dewormer that could be safely used on chickens with the correct per-pound dosage.

As a general rule, Stella needs to be reminded of certain fundamental daily tasks, many times over, especially in regards to self-care. But I never, ever need to remind her to close the coop at night or help me with the chickens’ medication. She does these things unwaveringly.

While we usually wait until evening to dose the chickens, by midday Stella will inevitably say something managerial like, “Mom, just a reminder to help me with the chickens’ medication today.” Then, in between conversations sparked by Stella’s many daily questions ranging from “Do people keep shrimp as pets?” to “Are we really getting out of Afghanistan?”, she will mention it again and again. I appreciate her persistence, because I admire her empathy for and dedication to the animals and because due to my lack of dedication to the animals I’d likely forget. The reminders keep coming until a specific time is selected or medication is in fact dispensed.

A chase ensues, causing serious questioning of my own dignity, until Stella picks up a defeated chicken, holding her securely under her arm like a football and grasping the feet together to avoid getting scratched by dirty talons. Hand over the chicken’s impossibly tiny head and covering her eyes, I open the beak with my thumb and middle finger, gentle but firm and holding fast until, as if some switch is flipped, the chicken accepts her destiny and relents. Using a dropper, and totally weirded out, I dispense the milky white liquid onto the bird’s pointy little tongue, ensuring the medication is swallowed and not aspirated. I let go, the now calm chicken contentedly swallows the dose, and Stella releases the bird who immediately pecks the ground and returns to chicken business as usual. This is how it goes–for all except the Black Minorca named Floppy. For her, we have to wait until cover of night.

Last summer, we had to break the flock of their sneaky habit of roosting up in a large, dense shrub at the edge of our property. But these days, come sundown, they return like clockwork to their coop. That’s when Stella opens its little back door, crouched down with her eyes at claw level. Stella can then easily grab a sedate Floppy from her roost and only then does a struggle begin, sharp dinosaur claws wildly flailing, beak frantically opening and closing, body and neck contorting every which way–some seemingly impossible. Then the usual process unfolds, with more firmness and determination on our part. We remind Floppy that we’re just trying to help her, goddamnit. That her life is at stake and we don’t like doing this any more than she does! She finally gets the message, relaxes, and our medication duties end for the day. It’s our turn to relax.

Their course of dewormer complete, Bex still gapes occasionally (of course) but she is acting “normal” and no longer lost in thought. She and the other chickens seem fine. The goat medication was likely their savior, not the refresher on existentialism, but we’ll never know for sure.

We both hated medicating the chickens, Stella and I. But when illness strikes, unavoidably, it simply has to be done. Maybe that’s one of the reasons that at the end of a good or tough day, white knuckle moments and all, keeping our flock is not a mistake. Just another sometimes hard thing with lots of upside, if you look for it.

Another education

Posted on by amberhj

As we look to rebuild after everything fell apart, once again, I’m struggling to find the thread that ties it all together.

The entrenched feeding aversion that led to an NG tube as a newborn that brought us to a new understanding of autonomy. The terror of seeing her eyes suddenly and persistently cross, requiring eye patching, vision therapy and bifocals, then eventually arriving at a place where anxiety didn’t dwell and acceptance ruled. The arduous therapy of all kinds, producing tearful meltdowns, impossible breakthroughs and, ultimately, decisions to let Stella truly be Stella. The ignorant resistance then wholehearted embrace of an autism diagnosis, rooted in an awakening to the beauty and courage of difference. And now, the perilous social-emotional decline of the last two years in public school, with our next destination, and certainly an upside or lesson, nowhere in sight.

Public school is not an inclusive environment for neurodivergent kids. The enormity of the system and its disregard for the wellbeing of kids like mine is breathtaking. Individual teachers care, yes. But they are trapped in a machine that is decades behind in its understanding of neurodiversity and hopelessly constrained by tax dollars in a society with an eroded social compact.

There are so many individual parents, like me, taking on Goliath day by day, step by step, toward a livable, non-toxic educational placement for their child. But it’s painstaking and isolated. So excruciatingly hard-earned as to be out of reach for many, whether due to a lack of time, access and awareness, or financial resources. I try not to think about the costs of hiring an education advocate, exploring therapies to patch the damage of rejection and constant misunderstanding, resorting to emergency mental health evaluations, sourcing private neuropsychiatric reports every two to three years, and securing legal representation to put down some semblance of a foot to stop the machine from destroying my child. All while supporting a girl on the edge, teetering on despair in any given moment, spark still flickering but dwindling fast.

How do we create a better educational system and world for autistic kids and all those who are socially different? It starts with sharing what we know and, I believe, connecting those individual dots of effort and resistance into a cohesive movement.

It’s hard to know what to do on a daily basis. How to make some small measure of progress rather than wait around for another deadline or threat. Reading the work of autistic adults is invaluable. As is connecting with those in similar shoes. I also have a new hobby, sending very direct “feedback” to researchers whose papers innately pathologize autism and interpret difference as disorder, so deeply offending them that you’d think they were the ones with nine times the average rate of suicide and 80% unemployment regardless of education or qualifications.

I have been working full-time for a nonprofit that promotes neurodiversity employment. But it’s like shouting into the wind, it doesn’t use my true strengths in writing and creativity aside from a general passion for communicating about the topic, and I don’t think I can continue while ensuring Stella gets what she needs. Lately, I can’t seem to focus on anything but making sure she’s okay. I mean, I really can’t. Just like during those early days with the tube and the glasses and the worry about what it means to be autistic in this world.

We’re in yet another chasm, Stella and I. But we’re down here together. And all those times over the years when we’ve fallen at the foot of impossible and gotten back up to say “no” and prove it wrong—whether within individual moments or spans of months or years—are informing us now. The stakes grow higher along with Stella, who now stands five foot three. Time to rise up.

Down time. And looking up.

Posted on by amberhj

The inside-out view from the fort in the woods at the end of the road.

When Stella was three, she was head-over-heels into ballet. She took creative dance classes with some toe pointing and ballet basics woven in. At home, she’d wear her tutu and watch YouTube clips of internationally renowned ballet companies, memorizing the performances. The living room became a stage.

During this little window in her lifetime, I purchased our first tickets to go see The Nutcracker, performed by the Pacific Northwest Ballet. I remember being so excited to tell her, “Stella, guess what? We’re going to the ballet!”

She responded, “BOOM-SHACKA-LACKA!” and pumped her little fist in the air.

Her reaction is still the best thing I’ve ever seen.

And in this time of being sequestered at home, her energy and observations in response to the shrunken world, and the wider one of her imagination, keep my outlook from falling to low places.

Like when she paints a picture with an ongoing (i.e. never-ending) story narrative that includes Elvis Presley, hybrid animal people of all kinds (she’s part wolf in this scenario), and a backstory as Swedish royalty. Or when she says something very wise, out of the blue.

Online school has been an unwelcome presence but there are moments where she engages and shines. I particularly enjoyed one paragraph, with its signature brevity and potency, that she produced for an assignment that accompanied the class’ reading of Tuck Everlasting.

They were required to write three sentences in response to a prompt: ” Why would you want / not want to live forever?”

She wrote, “I don’t think I would want to live forever. Because I’d experience friends and loved ones come and go. And I’d be very lonely.”

Stella’s snail mail correspondence has been a truly delightful glimpse into her relationships with old Seattle friends, now 3,000 miles away after our move. There’s a maturity that comes through in the thoughtful written word, it seems. “I have not forgotten you,” and “The leaning tree has fallen,” reports a younger, very dear friend, the kindhearted, bright spark of a boy who lived next door to us.

Here in our Massachusetts nook, the neighborhood kids keep their distance but some cheerfully say hello upon passing by, on every single lap around the half-mile loop.

An older woman who lives nearby gamely tried out Stella’s zip line. (Mad respect, lady.)

A new friend brought a colorful dozen eggs from their coop just in time for Easter cooking and baking.

Recently I reminded Stella that my birthday comes around next week. “I’ll bake you a cake, mama,” she said.

And right now she is eating lunch. “These are great nachos, mom!” Stella just told me, as she tried to finish quickly before her online social studies class.

I savored her sweet appreciation for a moment until she mused, “Opa once told me that when he was in the military he only had five minutes to eat. They always served corn on the cob but he had never had it so he just plucked off the kernel things one by one.”

Opa is one of her grandfathers, who came to the United States from Belgium when he was a little younger than Stella. Perhaps she now has the space to reflect and connect dots between her own experience and that of others, even with a mandatory zoom call looming. Or maybe this is how she thinks all the time, and I now have the space to notice.

We drive each other nuts sometimes. She hates the sound of chewing, especially mine, for example. But as limiting as this pandemic has been and will continue to be, Stella is a persistent miner of the vast richness to be found in small reflections and living rooms and memories.

Autism as superpower: Ode to the Gretas and Stellas

Posted on by amberhj

Ableist people insist that Greta Thunberg is a puppet. If you ask me, after I catch my breath lost from laughing, it’s not possible. Not rooted in reality.

It’s also deeply insulting and misguided to assume a lack of agency in this bright and courageous girl.

The doubters haven’t the faintest hint of a clue about the nature of autism or Aspies in particular. Right off the bat, I’m reminded of a not-uncommon autistic profile that includes strong aversion to external direction, demands and certainly outright commands, from others. There is an innate drive for autonomy at all times. “Aut” being the key syllable.

And by pure coincidence, I’m sure, a memory just played out in my mind, in which toddler Stella repeatedly grabs her coat to leave during our mommy-and-me-type music class.

We should all know by now that each person with autism is unique. The level of diversity is such that autistic people can be more different from each other than from neurotypical people. Yet there are some traits that show up again and again.

Here are just five commonly seen autistic traits that can be real advantages. And within them are clear reasons that the haters are wrong about Greta.

1 – Just the facts: Truth-seeking mindset

Autistic people are less affected by cognitive biases than their neurotypical counterparts. Able to disregard how information is presented or regarded and weigh the factual merits, some autistic people show innate talent in cutting through the noise and honing in on the truth. Peer pressure holds little to no sway, which is handy in situations where unwarranted hysteria or complacency sets in.

We see this in Greta, with her laser-like focus on the science and tireless, repeated insistence that our leaders act on it. She doesn’t get lost in conjecture. When challenged, she asks the contrarians to present their own carbon budget, their own data. But they don’t do that, because they are not basing their pushback on scientific truths.

As people retreat into ideological bubbles, cognitive biases run rampant. More than ever, we need people like Greta to keep us honest.

2 – Passion fueled: A powerful drive to learn 

Autistic people frequently immerse themselves fully into topics they love, areas of passionate interest, which can become the root of unparalleled skills, knowledge or creative expression. Traditionally framed as pathology, with terms like “obsessions” and “fixations,” these wells of expertise can be drawn upon for inspiration and education of others.

Obviously, Greta’s activism springs from passion, not puppetry. That’s why millions follow in her footsteps. To her credit, instead of simply giving in to despair over the grim outlook we face, she plunged into the science and worked to understand the crisis and proposed solutions.

As Barry M. Prizant explains in Uniquely Human: A Different Way of Seeing Autism, for neurotypical and autistic people alike, a strong interest “feeds a basic neurological need to be engaged, to appreciate beauty, and to experience positive emotion.” Before her activism, Greta rarely left home and had no motivation. Her strong interest, in climate change and environmental protection, connected her with her purpose and gave her new life.

Screenshot 2019-09-25 10.55.20

I’ve seen embarrassingly shallow and ignorant questions asked in response to Greta’s speeches and posts. Questions that could be thoroughly answered by a quick Google search. I’m glad there are minds like Greta’s to hold us to a higher standard.

3 – Sharp perception: Faster paths to solutions

Autistic people may have a perceptual upper hand. In a study by the University of Montreal and Harvard University, autistic and neurotypical individuals were asked to complete patterns in the Raven’s Standard Progressive Matrices (RSPM), to measure “hypothesis-testing, problem-solving and learning skills.”

Per the study’s lead author, “Some critics argued that autistics would be unable to complete the RSPM because of its complexity, yet our study shows autistics complete it as efficiently and have a more highly developed perception than non-autistics.”

Despite the complexity of climate science, Greta is able to process, synthesize and develop clear conclusions. Though, she still consults with experts to ensure accuracy. Because she’s a #baller.

4 – No nonsense: Direct communication

In a world full of bullshit, sharp, clarifying voices are incredibly valuable. Perhaps that’s why, more and more, the direct communication style associated with autism is being recognized as a strength in the workplace, given the proper fit. You may not want this quality in, say, a customer service rep. But you probably would benefit from it in the mechanic who spots an issue in the airplane you’re about to board.

Greta doesn’t mince words. She is as crystal clear as it gets. Yet, clouded by ideology or anger or whatever it is that causes grown adults to toss insults at a teenager who wants to save the planet, neurotypical people read into her words for the hidden meaning or agenda. There is none. That’s not how autistic minds work.

5 – On point: Detail-oriented precision 

Research, led by Simon Baron-Cohen, suggests that excellent attention to detail is part of the cognitive style of autism. While, through the lens of disorder, emphasis is placed on social and other information missed by autistic people, it’s important to recognize that they often glean highly specific information overlooked by others.

Not only does Greta get to the point, she includes salient details and references that directly support her communication, presenting her concerns with solidity and clarity that are sorely lacking in the greater public conversation about the climate crisis.

Greta is living, breathing proof of the need for neurodiversity in leadership. I’m so proud of her, and Stella, for being who they are. I hope that more and more people realize that by being unapologetically themselves, neurodivergent people can live more vibrant lives while teaching those around them and contributing immense value to society as whole.

(I didn’t like that damn music class, anyway. Thanks, Stella.)

How vision therapy is saving Stella’s toes, and then some.

Posted on by amberhj

The hardest working toes in the business (of running around)

The hardest working toes in the business (of running around)

Stella is a toe-walker.

She’s been tiptoeing around for as long as I can remember. Prancing, really. Her gait has been so bouncy and adorable, so evocative of a little ballerina, that her physical effervescence has charmed even sour onlookers. I’ve been kindling a small flame of worry about her overworked and constantly clenched toes, despite an inner voice that told me to stop looking for trouble where there was none.

Early last year, I met up with Stella’s occupational therapist–the OT who helped Stella overcome her feeding aversion–to check in and discuss ideas for an article about our feeding experiences. I couldn’t help but ask for her expert opinion on Stella’s toe-walking. And just as I’d hoped, she reassured me. She rightly noted that Stella could stand on flat feet, bend her legs and pick something up with ease. Stella walked flat-footed here and there, and when she stood still, it was often on flat feet. Clearly, Stella was not incapable of walking flat-footed. Besides, she was less than 18 months old at that time, and toe-walking is relatively common in such little ones. In my heart and soul, I agreed with this assessment. I mean, really, do we have to make every little kid quirk into a problem to be fixed? It made me angry to think that something so seemingly age-appropriate and  harmless about Stella could be pathologized. Enough with the medicalization of childhood already! As my dad used to bellow, in Braveheart fashion complete with a raised fist before leaving to pick up our Friday night pizza, “Who is with me?!” So I stopped worrying about it. For a while.

Fast forward a few dizzying toddler months. Sail past the great eye-crossing incident of 2010 and whiz by the diagnoses of strabismus/accommodative esotropia, hyeropia, anisometropia and amblyopia. Jump to Stella’s first appointment with her developmental optometrist, Dr. Torgerson (“Dr. T”) of Alderwood Vision Therapy Center. (‘Bout time I named her–we’re very lucky.) Upon meeting Stella, having taken her hand in the waiting room and led her to the exam room, Dr. T noticed that Stella walks on her toes. (Note: Stella’s ophthalmologist never noticed, or at the very least never mentioned, this.) During that consultation, Dr. T placed yoked prism goggles over Stella’s regular specs. Stella’s toe-walking was completely eliminated. She walked flat, instantly. No. Joke. Stella seemed to be looking at everything with new eyes. Dr. T seemed interested but unsurprised and made a note that this was worth exploring. I was still a bit defensive, a bit reluctant. I tried to reason around it. As in, “Well, she was just walking very slowly and cautiously due to the weird distortion of the prisms and that’s probably why she wasn’t as bouncy or tiptoe-y.” Of course, while my focus at that time was beginning a course of vision therapy to address the aforementioned diagnoses, I did at least make a mental note about the prisms’ elimination of her toe-walking. In truth, I pushed it aside, not wanting to create another problem. Not wanting to accept that in addition to her feeding and vision challenges, Stella’s toe-walking was “an issue.”

Turns out that the toe-walking wasn’t so much a seperate issue as an unexpected (to me) extension of her visual one(s). Since that fateful day, Stella has worn the prism goggles many times during vision therapy sessions. After the first time Stella wore them under the guidance of our vision therapist, Bethanie, I was sold on their effect. There was no denying it! I was struck not only by how her gait instantly changed, but also her demeanor. With the yoked prism goggles (the stronger the prism, the more pronounced the effect), she not only walks “flat” but also seems more calm and able to focus. The stronger ones are pretty overwhelming, however, so we’ve scaled back to some less powerful ones with plans to work in the original stronger pair soon. It’s a mind-blowing work in progress, if you will.

Stella's first run with the uber nerd glasses--I mean, yoked prism goggles

Stella's first run with the uber nerd glasses--I mean, yoked prism goggles

In essence, yoked prism goggles help re-wire the brain, forcing it to re-map spatial relations. Every time she wears them, they help her gauge the world more accurately. The repercussions are stunning. This isn’t just addressing Stella’s vision. Changes are happening in her brain, in how she perceives the world and her place in it. And that dramatically affects how she feels and behaves.

When Stella leaves those vision therapy sessions (wherein she wears the prism goggle, of any strength, really), she is more outgoing. She is open. Allow me to explain why that fact is so incredibly huge. I don’t label Stella as shy. I don’t want to presume, at age two, that “shy” is who she is and I don’t want to convince her that it is. But I will say that she is often quite tentative. We do see flashes of wonderful social interaction and friendliness–she’s very attached to her best friend, Cooper–so I know her social self is in there. But most often, she shrinks back under even the friendliest gaze from a stranger, or is daunted by mere proximity to people.

On the playground, Stella’s crowd avoidance is overt. She rarely uses structures if anyone else is there already. If someone playful soul is on or near the slide, instead of waiting for a turn or walking up with the understanding that they’ll be down soon, she avoids it completely. If people step aside and watch her, with a smile and friendly encouragement or quiet patience, she refuses to go down. She’s protective of herself. At music class, when the basket of instruments is placed in the center of the room, every other child in the room just flat-out goes for it. They make a beeline for the basket, and grab what they want, carefree! Stella immediately takes a step or two forward, only to halt as everyone rushes by. She waits for a big opening instead of squeezing in willy-nilly like the rest. Part of me has long wanted to push her into the fray. To tell her that she’s just as entitled and doesn’t have to wait for everyone else to take first pick. I just chime in with lighthearted encouragement, and a hand on her back.

Qualities like patience and shyness seem almost beside the point when I think about her vision, and the effect of the yoked prism goggles. I’m now convinced that such reserved, cautious behavior is due, at least in part, to the effect of her visual field–not just her innate personality. Crowded places (especially new ones) and chaotic situations can be so, so anxiety-producing for Stella. Thankfully, at long last, I now believe I understand why. She has trouble gauging her place in relation to a crowd. Per Dr. T and our vision therapist, Stella’s peripheral vision is likely limited, creating a type of tunnel vision that makes life more stressful. She’s always on guard because she’s learned that objects in her proverbial mirror are closer than they appear. She can’t quite trust her visual system in those situations. How startling that would be! And how draining and frustrating to be startled so often. So she takes extra precautions. Her separation anxiety, viewed through this lens of understanding, makes much more sense to me now. I’m her anchor amid the unfamiliar and unstable.

The same visual issues that cause this sort of defensiveness also give rise to her toe-walking. It’s not so much a problem as a solution Stella has come up with to better orient herself in the world as she perceives it. I get it now–the details may be hazy, but I am starting to understand a bit better how Stella sees, and how it affects her way of being.

Back to those yoked prism goggles! Despite some difficulty in getting her to wear them for extended periods, they seem to somehow relax her, and the results are stunning. After her last vision therapy session, during which the goggles are now a prominent therapeutic fixture, Stella ran out into the waiting room and strode right up to a much older child, looking him in the eye and beaming! I was elated. A few sessions ago, in the waiting area following one of her first (“full-strength”) prism goggle trials in vision therapy, Stella started chatting with another family. The mother was gently encouraging her children to put away the toys, and put on their coats, because “we’re going home.” Stella walked up to her, looked her in the eye and said, “We’re going home too! I’m going home!” She kept engaging them, over and over, as they walked out. They smiled and acknowledged her, probably regarding it as typical little kid behavior, but to me? I had to hold back emotion. On yet another such occasion, in between those two examples, Stella walked into the play area of the waiting room after goggle-clad vision therapy, waltzed up to the small play table which was closely encircled by older and taller children, and she confidently and without hesitation joined them. She nudged right in next to a 6 or 7 year old boy. She looked at him, started talking, and reached for the toys on the small table as the others played as well. She was unphased. I was awed. Deeply heartened. That was Stella, freed! That was Stella, no longer feeling caged in by her vision. Her world had opened up. She seemed lighter, less stressed, and more engaged with everyone around her. She carried an innate sense of security. I want her to feel that secure all the time (hek, I wish I did!), or at least more often. My hope is that continued use of the yoked prism goggles will get her there–in tandem with our other vision therapy efforts.

Already, Stella’s toe-walking is fading away. She isn’t so high up on her toes, and she uses her heels more often when getting around. Also! She used to flap her arms, especially when happy and excited, but we just realized that she hasn’t done that in a long, long time! Bear with me: Based on limited but fascinating reading, I’ve gathered that autistic children and others with tunnel vision (or other related visual issues in which ambient vision and/or depth perception are compromised) use arm flapping and toe-walking in part to help gauge their place in relation to their environment. Stella is not autistic, but there are clear parallels between Stella’s vision challenges, and even her behavior in specific situations, and those of autistic kids. Many of them would greatly benefit (not just visually but socially and emotionally and in all kinds of ways) from vision therapy yet never get exposure to it. Hopefully that’s changing as awareness of vision therapy grows. So much needless suffering could be eliminated or at least significantly reduced. I am the wanna-be Gandhi of vision therapy.

My view of vision therapy has greatly expanded over the months, along with Stella’s vision therapy regimen. At first, back in the dark ages, I viewed this work as the remedy for Stella’s amblyopia and probable accompanying deficit of stereoscopy. Plain and simple, just like the initial exercises: catching balloons, stringing beads onto pipe cleaners, and the like. Now, her exercises are centered around yoked prism goggles and vestibular activities. She’s using her whole body. Her brain is re-configuring the world. This isn’t an effort to “fix Stella’s eyes.” It’s a campaign addressing the myriad of ways her vision affects her physical and psychological wellbeing. And mine. Our stress reverberates between us, and can be overwhelming at times. I try to take a tip from Stella and just step back and be patient as we work through this, but sometimes I fail. It’s okay. We’re both doing the best we can. I get cupcakes for myself too often, but that’s a small and delicious price to pay.

The goal as I now see it? Stella won’t feel the need to tiptoe through life–literally or figuratively.