NeuroTribes Book Review

Autism, Books, Neurodiversity

I usually write book reviews in batches in my What Are You Reading? series, but I am dedicating a single blog post to NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman.

In the lead up to the book release, Silberman’s book was getting a lot of buzz in the press. It was featured or reviewed in The Atlantic, on NPR, the New York Times, The Guardian, Wired of course, he was interviewed for Forbes, did this great interview for Vox, I could go on but you get the picture. I read many of the articles and was so excited to read the book that I pre-ordered it, even though I am usually the kind of person who just waits for the public library to get it. The promise that he seemed to be making, that he had set out to dispel the common mythology of autism and present a more true and accurate picture of what autism is and who autistic people are, had me on pins and needles.

The background to the writing of this book is that Silberman himself is not autistic, but has been a writer for Wired magazine for years. In the 1990s he wrote a piece called The Geek Syndrome, which proved to be quite popular, about the apparent “epidemic” of autism in places like Silicon Valley. Warning if you want to go back and read that, it’s full of ableist language that made me cringe so hard I couldn’t get through it – it’s clear that Silberman’s come a long way in his view of autism since then. When he was researching that piece, he became curious about why there were so many autistic people in the tech community, and his research into that larger question eventually became Neurotribes.

The strength of this book is in clarifying the true history of autism research and “treatment” protocols (I put treatment in scare quotes because autism is not a disease therefore cannot actually be treated; nevertheless, plenty of people have tried). By far the strongest chapters were the ones on Asperger, Kanner, and Lovaas.

But let me explain, for those not familiar with those names. The popular mythology among non-autistics in the autism community (parents, professionals, doctors) is that in the 1930s there were two Viennese doctors, one in America (Kanner) and one in Austria (Asperger) who “discovered autism” at the same time. It’s been believed that Kanner found a group of children who were profoundly disabled, non verbal or nearly so, and so these children and others like them from then on were said to have “Kanner’s syndrome” which soon was called “classic autism.” Meanwhile, Asperger found a group of highly verbal, professorial and quirky children who didn’t relate well to peers but were quite clever. This type was supposedly lost for a few decades and eventually surfaced as “Asperger’s Syndrome,” sometimes called “high functioning autism.”

One of the reasons this narrative has been so compelling is that it has allowed many people to argue that children with “classic autism” should be cured or treated to help them become more “normal,” while children with “Asperger’s syndrome” are mostly just quirky and smart. Many people who push back against the neurodiversity movement have asserted that in fact we should probably just split these up into two completely diagnoses and not call them both autism.

Such arguments are the reason why Silberman’s new historical record of the history of autism research is so important to how we view autism today.

In NeuroTribes, Silberman reveals that Asperger in fact describes a whole range of abilities and disabilities in the children and teenagers that he saw in his clinic. He correctly perceived that these abilities and disabilities were intertwined, essential to the person, and lasted throughout their lives to varying degrees. He believed autism was “not rare,” once you knew what to look for. He also identified autistic traits in the parents of his patients, though curiously he believed he never met any autistic girls and surmised that perhaps female autism was something that set in during adolescence, since he believed he had met some autistic mothers.

(It is posited that this could be because his clinic/school was a place that children were sent after having behavioral problems in typical schools, a problem that autistic girls have somewhat less often than boys; I’d guess it’s because autism in girls is poorly understood in general.)

One of the most fascinating details of this history is that in 1938 when Asperger gave his first and last public talk at University on his research into autistic children, the environment in Vienna at the time was one in which there was tremendous pressure to fall into step with the Nazi regime. For psychologists like Asperger and his staff, that meant participating in the genocide of disabled children, a program that this book went into in heartbreaking detail. By the end of this chapter I was weeping as I read.

Because of that dangerous atmosphere in 1930s Austria, Silberman asserts that Asperger put a spin on his research in order to emphasize the gifts and societal contributions that certain of his patients had to offer, outlining the case studies of four highly intelligent and scientifically gifted boys who had some minor social difficulties. Because Asperger had elsewhere written of the vast “continuum” of autistic traits, it is reasonable to assume that he was quite deliberate in “pitching” the strengths of a few in his clinic to save all of the children in his care.

After that talk, Asperger’s research was subsumed by World War 2 and tainted by a perceived association with Nazi eugenics, buried for decades. When it finally resurfaced in the early 1990s, his portrait of autism had become skewed to resemble what we now call “Asperger’s syndrome.”

What was happening in the US at the time was that Kanner, another Viennese psychologist who had come to America earlier, was also doing research on autistic children. Kanner had trained to be a general practice doctor and found a convenient back door entry into psychology (basically a clinic said “we need a psychologist, you’re hired”) that gave him a case of Imposter Syndrome. Silberman argues that Kanner was thus driven to establish himself as a person of importance in the field, and that is why he established criteria for autism that was narrow and specific enough to ensure that it would be considered a condition both rare and severe.

The crucial missing link that Silberman discovered was that Kanner hired as part of his clinical staff two former staffers from Asperger’s clinic – most notably, Georg Frankl, Asperger’s chief diagnostician. Despite this connection, Kanner never mentioned Asperger’s work in his papers, claiming the credit for discovering autism himself, and Frankl and Weiss apparently never spoke up either (Silberman implies that they may have kept silent because they owed Kanner their lives after he helped them escape Austria and obtain work visas in the US).

Kanner went on to establish autism as a specific diagnosis for children he believed should be institutionalized throughout their lives, in part because he blamed their parents, particularly “refrigerator mothers,” for what he saw as a severe mental illness in young children. Oddly enough, though he characterized this disease as “infantile autism,” he did not theorize, research, or even seem to wonder what happened as the children grew up – I suppose because they were institutionalized and forgotten by society. In my view, this left a conceptual vacuum in which later generations of parents could insert all manner of theories about toxins, causes, and quackery about cures and treatments that would “recover” their children from this “disease.”

Other key chapters of the book detail the history of how parent groups came to dominate the field of autism research and public awareness, much to the detriment of autistic children in most cases. Bernie Rimland was a big figure in that particular history as an early proponent of toxicity theories, biomed treatments, and what is known in the autistic community as “curebie” talk. Though his son grew up to be a happy, healthy autistic man with a full life, Bernie Rimland to his dying day expressed that he wished above all for his son to just “be normal.”

The chapter on the history of ABA (Applied Behavior Analysis, still the most popular therapy for autistic children) was also heart wrenching as Silberman laid out the work of its founder, Ivar Lovaas. Lovaas believed that autistic children literally were not people – that they were essentially human bodies without humanity. His work focused on shaping their behaviors in order to make them appear more like typical children, which he argued was the only way they could learn anything at all, often using harsh punishments such as electric shocks. His work is associated with the equally horrifying work of George Rekers, who used Lovaas’s techniques to try to cure young boys of “sissy boy syndrome.”

And of course, there are the crucial points in time when the DSM (Diagnostic and Statistical Manual of Mental Disorders) expand their definitions of autism in the 80s, and then add Asperger syndrome and PDD-NOS in the 90s (only to remove them in 2014), which, coupled with better educational standards and services, gives rise to the supposed, mythological, totally nonexistent “autism epidemic” of modern times.

These are the dark annals of autism history that autistic people usually know, while many parents and professionals do not or choose not to think about. So I was appreciative of Silberman bringing them to the light of day, and to a wide audience.

The rest of the book was rather weak.

That may be overly harsh, but when it came to actually showing his readership who autistic people are, how we experience the world, and what we need from society, the work just wasn’t there, which felt joltingly anticlimactic after the incredible detail of his research on Asperger, Kanner, and Lovaas.

I was baffled by the fact that there were entire chapters on ham radio operators and the making of Rain Man (NOT even based on an autistic person, gah!!), and almost nothing on autistic girls or women. Just as Silberman went through the history books to find famous male autistics like Henry Cavendish and Paul Dirac, couldn’t he have dug through and found even one autistic woman? I know that there were female ham radio operators and science fiction geeks in the 1960s, but none are mentioned. The only female autistic to get any play is of course Temple Grandin, whom frankly most autistic women are pretty tired of, because she is always the token Lady Autistic when in fact most of us don’t relate to her that much at all. I could name a number of more interesting and relatable and important autistic people who are NOT men off the top of my head, from Donna Williams (mentioned, but only briefly), to Cynthia Kim, to Lydia Brown (mentioned but that’s it), to Amy Sequenzia (how is she not in this book?), Ibby Grace, and more.

Also frustrating for me was that Silberman focused so much on tech, science, and math geeks in his autistic profiles. Newsflash, not all autistic people are into STEM. I do find those people interesting, sure, but autistic people are also writers, artists, social activists, teachers, therapists, parents, and many other things. I know Silberman is a tech writer and that’s his thing, but it’s misleading to focus on that one wedge of autistic interests to the exclusion of all others.

Furthermore, I was greatly disappointed in how he emphasized the autistic people who are geniuses, inventors, and people who change the world. Even when he profiled people who were pronounced “low functioning” as children, he chose to highlight the individuals who went on to demonstrate genius IQs or special abilities. The fact is, many other autistic people live ordinary lives, and many need a lot of lifelong support.

I was so disillusioned to realize that Silberman was never going to get around to pointing out that it is NOT the material achievements a person is capable of that make them worthwhile as people. This trope that autistic children are worthy of love because they have the potential to be brilliant engineers is so harmful. It leaves the door open for non-autistic adults to try to “recover” them and make them “more normal” while they are young, and it leaves disabled teens and adults who AREN’T brilliant scientists (and let’s face it, most people don’t turn out to be brilliant scientists) out in the cold without a place in society.

That is not autistic acceptance. In this way NeuroTribes fell far, far short of what I was hoping for.

I was left with the strange suspicion that Silberman was in fact reenacting a version of Asperger’s 1938 University of Vienna talk in which he emphasized the gifted autistics to an audience of genocidal eugenicists. Did he consciously, or maybe unconsciously, pitch us a package of autistic geniuses because his main audience is so antagonistic toward autism that he felt this was the only way to reach them? This might be the case, but in the end, for me, it’s not good enough.

Even so, and this may sound inconsistent, I would still highly recommend the book to everyone, absolutely everyone. The history here needs to be common knowledge. And when you are done with NeuroTribes, I suggest you visit Autonomous Press, where autistic people are publishing the work of autistic authors, to round out your reading.

“Tendril Theory” Was a Plea for Acceptance

Autism

TendrilTheory

*Image is a comic titled “Why it’s hard to switch tasks (Let’s call it Tendril Theory).” 

When I’m focused on something / My mind sends out a million tendrils of thought / Expands into all of the thoughts & feelings / When I need to switch tasks / I must retract all of the tendrils of my mind / This takes some time / Eventually I can shift to the new task / But when I am interrupted or must switch abruptly / It feels like all of the tendrils are being ripped out / That’s why I don’t react well / Please just give me time / To switch tasks when I’m ready.

While I was traveling about two weeks ago, my Tendril Theory comic (shown above) was going viral. What a time to be mostly offline! I would check into Facebook at night in the hotel, scrolling through people’s awesome comments and watching the number of shares grow. I’m not going to pretend to be humble – it was thrilling.

You see, this is really my dream. Not to illustrate other people’s ideas for money, but to draw (and write) my own ideas and somehow make a living from that.

So when someone left a comment asking if they could post my comic to Huffington Post, I simply replied, yes! I honestly didn’t think too much about what that would mean; I assumed it would go up as a image with my name in the byline and that would be that. I closed my computer and drove eight more hours, not thinking all that much about it except to hope, in the back of my mind, that my comic was really going to hit HuffPo.

Then a week after that I woke up at my dad’s house and Mike texted me to look at Facebook. I only had my phone with me, so I checked it out and saw that my comic did indeed make it onto HuffPo, with an intro by a parenting coach. For some reason that’s all I saw that day – I don’t know if my phone failed to load if I failed to scroll down, but I didn’t see the body of the article.

It wasn’t until I got back to my computer, in another hotel room in the midst of our drive back home, that I was able to read the full piece. And I began to have second thoughts about the way the comic was used to illustrate her article. Though she had given me credit for the drawing and though her parenting advice is centered around respect for children, there were some things that weren’t sitting right with me.

I polled some of my Facebook friends to ask what they thought I should do. Opinions were varied. I thought some more. I went to sleep. When I woke up in the morning, what I wanted to say to the parenting coach came to me, almost fully formed, from whatever mysterious place that ideas come.

Following is an excerpt of a message that I wrote to Carrie Contey, which I told her I would reproduce on my blog after I had heard her response.

One thing that you must know is that I created this comic about myself: an autistic person, an introvert, who has ADHD, and I am an adult. This comic was never intended to describe children, or to explain a “phase” that they go through. Though it does apply to many children, its primary subject matter is the kinds of *people* – of all ages – whose brains are hard wired to work in this way. 

Creating and sharing Tendril Theory with the world required a great deal of vulnerability for me. In this comic I exposed my inner self and the way my mind works specifically as a request for understanding and acceptance. Moreover, for people like me the ability to delve deeply into a subject or a thought or an idea is not a deficit, something to overcome or deal with or work on improving – it is, in fact, one of our great strengths. Without people who think like us, the world would be a different, and surely a less interesting, place. 

I ask you to re-read Tendril Theory. Read it slowly and carefully. Know that each and every image and word was chosen with great care and deliberation.

When you see the face of the person whose tendrils are extended into thought, see that their face is blissful, meditative. This state of mind is restorative. It’s a refuge from a world that is often overwhelming and chaotic and loud for people like us.

When I ask the reader to please give me time to time to switch tasks when I’m ready, note that the words “when I’m ready” are quite specific. It doesn’t say to give me a little extra time, an extra minute, or a few more seconds. It asks you not to impose your timetable on me. 

Read Tendril Theory one more time and see it for what it is: not an operating manual, but a plea for acceptance.

Carrie wrote back to me promptly, even though she too was traveling. Her reply was respectful, empathetic, and thoughtful. She submitted to me for review an edited version of her article that incorporated the points that were most important to me, also offering to remove my comic or remove the article from HuffPo altogether – whichever I preferred. I found her new version of the article to be highly satisfactory, and really I felt she went above and beyond what I’d asked of her by including much of  my point of view.

And so, I am proud to share, The Tendril Theory on Huffington Post.

This tale has a happy ending, but it was an important and potentially painful learning lesson for me. I got lucky that it was someone as compassionate and open as Carrie Contey who brought my work to a larger platform, when it could easily have been someone less scrupulous. When I put Tendril Theory out into the world, I admit that I didn’t think that much about how it would be used and by whom. I didn’t think “this will go viral,” I just though naively, “here’s a thing I made, maybe some people will like it.” I didn’t even put a watermark on it – I just asked people to give me credit if they shared it, and hoped that they would.

If I merely wanted to post up comics as a hobby while I pursued a more traditional commissioned illustration career, it wouldn’t be such a big deal. I am reminded of the comic Rob Delaney and his policy for Twitter joke theft: “Go ahead and take ’em, mother*^%er. Here come five more.” Sadly, I am not as prolific as Rob Delaney, and my comics aren’t my side gig – or at any rate, someday I hope they won’t be.

So I don’t have it all figured out yet, but I know that I have to think about what I want to do with my work going forward, how and where I want it to be used, how I can I balance sharing comics for free (which I fully intend to continue doing) with parlaying this work into an income, however modest it may be.

Patreon is one avenue I am looking into – where artists can get paid every time they release work, kind of like an ongoing Kickstarter project. Another one that I have up and running is my Redbubble shop, where you can buy my artwork printed on notebooks, coffee mugs, t-shirts, posters, and more (I have sold a few Tendril Theory items already – woot!).

I have another comic idea in the mental pipeline, so I will see if I can handle its release a little more carefully. Even so, I am still thrilled with the popularity of Tendril Theory and in the end I can count the HuffPo article as a success.

Stranger in a Familiar Land

Identity

Finally back from a near two week vacation, I am slowly picking up all of the pieces of unfinished business I left at home, the daily routines, and the toys forever scattered across the floor, to get back to normal life.

I drove from Nebraska to Massachusetts with my two kids, and back again. Just us, because Mike does not get any vacation time from work until next year. Before we departed I was already in a bit of a crashed state. I was worried about how I would be able to navigate things like pit stops, hotel accommodations, and driving eight hours a day for three days each way, with two young children.

To help manage this, I balanced organization with wiggle room. I packed everything we might need. Favorite toys and books, weighted blanket, plenty of clothes, Advil, nail clippers, everything, everything. I downloaded some videos to the iPad in case we found ourselves offline and in need of electronic entertainment (we did, and that was extremely useful!).

I mapped out our route including picking out towns we could stop in overnight (giving myself two options in case I wasn’t able to make it to the further destination that day). I price compared hotel chains so that I knew which hotels to look for, but I did not make reservations in case our schedule did not go as planned – I didn’t want to be stressed out about making it to a precise hotel each night. I packed snacks, brought water bottles, and my brother-in-law lent us a DVD player for the car so I brought ALL the movies.

I packed one giant suitcase for our main stay with family, and one small rolly case that contained everything we needed for two nights in hotel, so that I could carry it all up to the room myself (assuming the kids would not help carry anything, because you just don’t want to depend on little kids being 100% helpful!).

And of course, I mentally prepared the kids for what we were doing. That we would drive for three days to get to their Nana’s house. That daddy couldn’t come but we could call him on the iPad and do a video call. That we were going to be driving a special surprise car (I rented a car so I could not describe them WHAT kind of car it was until I picked it up that morning). That we would sleep in hotels two nights and then we would be staying at Nana’s house, and also Pop’s.

The traveling went quite smoothly. Once I was in motion, I was not as nervous as I’d been when I was anticipating the trip. I was reminded of a blog post by M Kelter, in which he wrote, 

It took me a few years to understand why [when] I traveled, felt completely out of place…yet oddly comfortable at the same time…then finally realized: I’m more at ease in strange settings. Awkward is my natural state…so trips overseas, where I’m an outsider, a tourist, and the expectation is that I won’t mesh with the surroundings…that’s a good fit for me.

For me, that’s what travels means. Suddenly, my daily, inexorable social discomfort is appropriate to the context. It’s a rare thing to feel. I like it.

That is true for me too.

The children traveled well. We drove about eight hours each day. The last hour was always a bit frayed, but we made it through. We ate fast food, which we never do in regular life, but was easy and kid friendly and fast while traveling. We got pizza delivered to our hotel one night, spaghetti another. On the way out they finished all the snacks I’d brought by the end of day two. On the way back we were better prepared, food-wise.

The hardest thing about traveling with kids and no other adult is that you all have to go EVERYWHERE together. One person has to pee, everyone goes to the bathroom whether they like it or not. Even if one of you then decides they didn’t have to pee after all.

If, after lugging all the stuff up to the hotel room finally at last after eight hours of driving, you realize you left your phone charger in the car, hey guess what kids, we’re going on a super fun adventure back down to the lobby together!

Overall, though, it was surprisingly not bad at all.

We made lots of good memories with family, including boat trips, ferry rides, swimming at the beach, a pool party, feeding chickens, and even a trip to the Agricultural Fair in my hometown. It was lovely to see my kids strengthening bonds with geographically distant family members.

I often felt lonely in a crowd while traveling, but that feeling had a comforting familiarity. I missed Mike and texted with him a lot, but the upside was that there were times that other family members were entertaining my kids so I got some restorative time alone. And not insignificantly, it was a confidence booster for me to realize that I could accomplish something as epic as a solo-parenting 3000 mile journey by car.

Re-entry into regular life has been a little rocky, as the end of vacation tends to be. Though we are back to our old routines and to our missing family members (Mike, but let’s also not forget our canine buddy) and to our beds and our home, we’re also back to the grind. No longer is driving or swimming the only thing on the itinerary – even without school, we have appointments and obligations galore. I have messes to clean and meals to prepare.

While I was traveling I had a rekindling of imagination, comics and blog posts springing to mind fully formed, but they’ve partially evaporated in the faster pace of home. Time to myself no longer arises organically but must be carved out, sometimes with painstaking force. There is, to be frank, a certain letdown in realizing that a vacation was not a permanent cure for what was making me feel pulled so taut before we embarked. And so I push on through.

Tendril Theory

Autism, Neurodiversity

I don’t always do crossover posts between this blog and Human Illustrations, but when I do, it’s because I drew a thing that is going viral.

I drew and shared this comic on Saturday, posted to Facebook and Tumblr. It was by far the most shared post I’ve ever created on Facebook and may edge out the Boycott Autism Speaks cartoon I posted on Tumblr.

I came up with “Tendril Theory” when someone in a support group asked for a good way to explain executive function, specifically the challenge of being interrupted or having to switch tasks suddenly, to a neurotypical person. The image and words came to me all at once. It took me a few weeks to sit down and draw it.

I think the reason this resonates with so many people is that a lot of different kinds of brains work in a similar way – not only for autistic people, but also people with ADHD, and neurotypical introverts. So if this doesn’t describe you, it probably describes someone you know.

TendrilTheory

*Image is a comic titled “Why it’s hard to switch tasks (Let’s call it Tendril Theory).” Simple line drawings illustrate the following text:

When I’m focused on something / My mind sends out a million tendrils of thought / Expands into all of the thoughts & feelings / When I need to switch tasks / I must retract all of the tendrils of my mind / This takes some time / Eventually I can shift to the new task / But when I am interrupted or must switch abruptly / It feels like all of the tendrils are being ripped out / That’s why I don’t react well / Please just give me time / To switch tasks when I’m ready.

The Question of Parental Oversharing

Parenting, Writing

As my kids have grown out of infancy, I’ve thought more and more about where the boundaries are around what I share here on my blog and on other forms of social media. I think about it quite a lot, and I’ve wanted to write about it many times, but I have backed off every time in fear of being too judgmental of other parents. I don’t want to add to all the noise in social media about how parents aren’t doing this or that right – I know intimately how completely overwhelming and crazymaking that can be when it reaches a certain pitch.

So this is not an advice column  – more of an invitation to work through this question with me, because it can be pretty tricky and confusing. How much is okay to share when it comes to our children? When it comes to photos, anecdotes, funny moments, hard moments, and when it comes to asking for advice or support?

I like to write about my life (obviously) and I’m not one to bemoan the evils of social media too much. I am an autistic parent, which means that most like parents, I have a need to connect with other adults who share similar interests and experiences, but like most autistics (and introverts, for that matter), I have a limited amount of energy to socialize in person or on the phone (actually I have NO energy to socialize on the phone and would rather stab myself repeatedly in the eyes with a fork thank you very much). So for me, Facebook and Twitter and blogging are pretty much the best things since sliced bread.

My kids are a big part of my life of course, and I’m with them almost all day almost every day. They take up a lot of my headspace. I love them and think they things they say and do are interesting and amusing. It’s natural for me to want to share some of that as I write about my days, I think, but the older they get they more I become aware that their stories are not mine to tell. So more and more lately I am trying to zero in on the incredibly fine line between writing about my life as their parent, and not writing about their lives as individuals who have a right to privacy but do not actually know what the internet even IS yet besides an endless fount of cool videos.

When I think back on my childhood, my parents are part of my story, an integral part, a shaping influence, but they aren’t the main characters. I am. And my kids are the main characters in their own stories, not supporting actors in mine.

So if you have noticed that I’ve been writing less and less about them here on my blog, it’s not just because my autism diagnosis has provided me with a lot of non-kid-related material, but also because I am deliberately moving away from oversharing.  

Image is a faded cartoon line drawing of a tree, a child, and a dog. Over that are printed blocky letters that say “My kids are the main characters in their own stories, not supporting actors in mine.”

I suppose “Mommy Blogging” seemed less problematic to me when the kids were babies. New parents are on a steep learning curve. I know that I was quite frantic at times to reach out and ask whether I was doing anything at all right! And since babies pretty much all do more or less the same things (eat, sleep, cry, poop), I don’t think anyone’s child will mortified to learn that his mom once asked whether the consistency of his poop was normal. Hey, we all wondered about that at some point. And all babies poop. They aren’t terribly private about it either, I’ll tell you what.

I don’t know when exactly they change over from Everybaby to little tiny people, but they definitely do. And then all the questions begin. What is okay to share? What isn’t?

The business of protecting privacy while sharing our lives is so complicated and multilayered. I have been developing a rather convoluted system of levels of privacy. I share pics of the kids on Instagram, but I monitor who is following me. I don’t share kid pics on Twitter. I do share some funny kid stuff on Twitter but without using their names. I share photos of the kids on Facebook a little less than on Instagram, and I do share funny or cute stuff about them with their names. But I also have some different friends lists for different levels of intimacy. I do share photos and names and some anecdotes here on my blog, but honestly I’m becoming less and less comfortable with that stuff and thinking about how to move away from that while still writing about being a parent.

Sometimes I wonder if I will lose followers who came here for cute kid stories and are getting bored of hearing about sensory issues or social justice or whatever else is on my mind. But hey, it’s my blog.

I do still like to read about other people’s family lives though, is the funny thing. Other people have come up with other solutions to this privacy issue, like blogging under pseudonyms. I decided a few years ago not to be pseudonymous here because this body of work is important to me and I want to have my name on it. Some people make their blogs private, another good strategy, but I didn’t do that for the same reason cited above. Perhaps I could have invented names for the kids, but that would probably be a flimsy wall to climb if anyone wanted to find them.

I like the idea of asking the kids’ permission to write about them, and probably will someday, but they aren’t old enough yet to understand what writing on the internet means. When I do write about my children, I try to keep in my mind the idea of them someday reading this. Or of their friends someday reading this. Or of their boss someday googling them and finding this. I never want them to feel embarrassed or as though I made their lives all about me. Though I would be happy for them to someday read this and know that I respected them, was proud of them, and felt privileged to stay home with them. I know I have not always managed this well, but I’m trying very hard to do better.

What Are You Reading? Not My Favorites Edition

Books

Image is the cover of Acme Novelty Library #20 by Chris Ware; it is a blue rectangle with darker damask stripes on the sides and light blue in the middle, and the word LINT in the center.

One of my friends’ kids’ has a phrase he uses to politely express that he doesn’t like something: “It’s not my favorite.” I love that! So here are some recent reads that were just… not my favorites.

(This post contains affiliate links.)

* The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband by David Finch. This memoir was recommended to me by someone who knows I am autistic and married to someone who isn’t. It had some funny bits – I did enjoy Finch’s sense of humor – but mostly I just found it frustrating. It’s full of unhelpful stereotypes, misinformation, and I was annoyed by both Finch and his wife in equal measure. Finch buys into the myth that autistic people lack empathy; this is just plain wrong – has been proven to be false. I think he’s just an insensitive, selfish dude and the (outdated, wrong, mythical) notion that he’s not capable of empathy served as a convenient excuse for him to behave like an ass. On the other hand, his quest to stamp out his own autistic traits was disturbing and misguided. I shudder to think what ableist people will think when reading this (autistic people can stop being so autistic if they just try harder!). I also kinda wonder why it was recommended to me. Huh.

* Cecil and Jordan in New York: Stories by Gabrielle Bell. A set of short stories in graphic novel form, I wanted to like this book but was frustrated by it so much that I ended up disliking it. Each story started out with promise and pulled me in, but each one ended so abruptly that I did a double take. I don’t mind an ambiguous end if it feels crafted in such a way to imbue meaning, but these just cut off suddenly and left me unsatisfied. There also was a weird misogynistic undertone that I wasn’t sure how to interpret – satirical? Or just dark? Most people on Goodreads seem to love it, though, so maybe I just didn’t get it.

* Best of American Splendor by Harvey Pekar. I loved the movie American Splendor, so I thought I would dig this book, but. Gosh. It was awful. Walls and walls of text on top of visually busy drawings. It was like screamo for my eyes, but like the most boring, banal screamo you could ever imagine, all about making appointments and working as a filing clerk. The best parts were stories about people OTHER than Harvey Pekar but they were too few and too far between. Honestly I just skimmed most of this book. Moving on.

* Blue by Pat Grant. Graphic novel very loosely based on the author’s life, about growing up (white) in Australia during an immigration boom. Three working class kids skip school to go surfing and find a dead body; meanwhile, the immigrants are represented as actual outer space aliens who ruin the little white-people town by being weird and gross. I was waiting for an ending in which things are tied together somehow or the aliens turn out to be people too in some way but it just kind went out on an “immigration sucks” note that was rather baffling. I also felt like I was missing a lot of Aussie cultural references. Oddly enough though, the Afterword to this book was really great. Grant reveals that he is NOT a xenophobic anti-immigrant racist (so why he wrote the story this way I do not know) and offers up some great insights about comics and surfing. So maybe borrow it from the library and just read the afterword.

* Acme Novelty Library #20 (aka LINT) by Chris Ware. I saved the worst for last, as I barely have words for how much I loathed this graphic novel. Graphic novel nerds mostly say that this is a masterpiece, but I found its unrelenting misery and misogyny to be mostly just repulsive. The story of Jordan Lint is a miserable, depressing story about a terrible person who has a shitty life, treats everyone around him atrociously, never redeems himself, and then dies. This grim tale is juxtaposed over Ware’s extremely abstract graphic artwork, reminiscent of a bathroom gender sign, which is certainly interesting, but so dry and airless that it made the story itself feel even more brutally nihilistic. I guess I might see the artistic value in this if so much of it didn’t depend on the sexual degradation of women to fuel its grisly narrative. Just, yuck.

Floating Rants

Parenting

Usually I like to post longer posts on Mondays, thoughtful or inspired pieces that sometimes take me weeks to write and other times come to me almost full formed in one sitting. But I haven’t felt especially thoughtful nor inspired this past week so I don’t have one of those posts ready.

I have these floating thoughts that I haven’t been able to flesh out into full posts, though.

I wish that people would stop using words like “stupid,” “idiotic,” etc. to comment on current events or political views that they find dismaying or despicable.

Never mind that lots of highly intelligent people have been responsible for things like genocide, murder, oppression, etc.

Never mind that IQ (which I don’t believe is an accurate measure of anything in the first place, AND which by the way was invented by a eugenicist) is largely determined by genetics, which are in no way tied to your value as a human being.

Never mind that using “stupid” and “idiot” as routine words to express displeasure is a self-esteem destroying cultural virus that hurts children (and adults!) with (and without!) learning or intellectual disabilities.

Being smarter does not make you better. I would hope that this would be obvious, after all I did not coin the phrase “intellectual snobbery,” but I see a lot of people who are otherwise nice people perpetuating this harmful stereotype.

How about you just express your opinions using words that are actually more accurate and have the bonus feature of not being ableist and discriminatory: I think this person is wrong. This policy is counterproductive. This politician is regressive and hateful. This act was careless.

The English language is rich. Choose better words.

Sandra Bland died because of the abusive actions of the police. But let’s not deny her experience of depression as we advocate for justice.

I follow a lot of #BlackLivesMatter stories, and the sheer number of them is overwhelming, which fact by itself is also overwhelming. The fact that I can’t even keep up with how many black people are dying at the hands of police and other racist individuals is horrifying.

But Sandra Bland is one of those people who is just haunting me. I watched the dash cam video, mostly listened to it actually because it was hard to process visually, and the helpless rage in her voice as she knew, she just knew they were stripping her of her power and dignity out of nothing but pettiness, racism, and the ability to do it – and she couldn’t stop them – it shook me to my core.

And then I saw one of her Sandy Speaks vlogs in which she spoke out about why she believed BlackLivesMatter, and I heard the voice of a woman who wanted to make a difference, who wanted real justice and equality. To know that they took that away from her, over nothing, over a trifle, just because they could, is heartbreaking.

But then the justifications for ruling her death a suicide started coming out, including that fact that she had a medical history of depression – which I have to say sounds like a violation of HIPAA rights, I’m not sure – and the counterargument that Sandy would have never killed herself. I have to say that it is okay for Bland to have experienced depression. Let’s not take that away from her. It does not invalidate or in any way lessen her passion for justice, it doesn’t diminish her character, it doesn’t justify her death. Ever.

Not allowing Bland to have been depressed is yet more oppression. Not only should she have been more submissive when pulled over for a minor traffic violation, not only should she have silenced her outrage when wrongfully arrested, she also should have been stronger emotionally and somehow vanquished clinical depression by sheer force of will? Let’s not do that to her. There’s an implication when we say “she would never” that suicide is cowardly and weak. We know that’s not true. And we know that Bland was not weak. The woman in that dashboard cam was not weak.

Whether it was Bland’s own hand or someone else’s that physically extinguished the life from her body, the police killed her, have no doubt. To be falsely arrested, abused physically, gaslighted, and locked up under a bail wildly out of proportion with her so-called crime is a form of torture. Whatever happened in that cell – they killed her.

Also, I would like us to stop blaming every mass murder on mental illness. 

Can we just not, anymore?

This is lazy thinking and harms people with mental illnesses. It stigmatizes them and forces them to hide. It prevents people from getting treatment they need (I mean seriously, who’s going to go see a psychologist if they think that they are practically admitting to being a potential serial killer??).

It’s also just incorrect.

Maybe we have just watched too many movies and crime serials, because in those practically everyone who kills someone also secretly wears ladies’ skins or dresses their mother’s skeleton up in a wig, but these are just basically campfire ghost stories that we like to tell to creep ourselves out.

In reality, most mentally ill people are not dangerous, and most are more likely to be victims of crimes than perpetrators. In reality, most people who kill people are motivated by non-crazy (though wrong and bad) human qualities like jealousy, rage, racism, ableism, misogyny, etc.

Maybe we are just too scared to see those qualities in a serial killer or mass murderer because we know we possess some smaller, less homicidal form of them ourselves. Or we could. Or we know someone who does.

But just as mentally ill people can ALSO be murderers (as sometimes these criminals do have a history of mental illness, yes), they can also be bank tellers, parents, construction workers, CEOs, doctors, teachers, or dog walkers, and they are MUCH more likely to be all of those non-murderer type people.

I think that’s all the ranting I’ve got in me today.

Feel free to add yours in the comments.

Perhaps I’ll have something more coherent to write about next week.

Infodumping is My Love Language vol. 4

Parenting

Infodumping* “A 2013 study of 297 college students reported in the Journal of Child and Family Studiesfound that college students with helicopter parents reported significantly higher levels of depression and less satisfaction in life and attributed this diminishment in well-being to a violation of the students’ ‘basic psychological needs for autonomy and competence.’ And a 2014 study from researchers at the University of Colorado–Boulder is the first to correlate a highly structured childhood with less executive function capabilities.” – Kids of Helicopter Parents Are Sputtering Out, by Julie Lythcott-Haims at Slate.

* “If you’re an activist or collective that needs some quick design or visualization work done, but don’t have tons of resources to manage it, these might be useful for you.  They’re also great for those who just want to get their feet wet in design and get used to a few different types of visual vocabularies. ” – 10 Free Design/Visualization Tools (For Activists), at Queer Dark Energy.

* “In a world so swiftly moving towards the acceptance and understanding of the most diverse groups of people, you are one of the open-minded, kind-hearted who dare to believe that we are more than just our diagnoses or our struggles.” – The Neurotypicals’ Guide to Adults With Sensory Processing Disorder, at Everyday Feminism.

* “University of Rochester psychologist Ed Deci, for example, found that teachers who aim to control students’ behavior—rather than helping them control it themselves—undermine the very elements that are essential for motivation: autonomy, a sense of competence, and a capacity to relate to others. This, in turn, means they have a harder time learning self-control, an essential skill for long-term success. Stanford University’s Carol Dweck, a developmental and social psychologist, has demonstrated that even rewards—gold stars and the like—can erode children’s motivation and performance by shifting the focus to what the teacher thinks, rather than the intrinsic rewards of learning.” – What If Everything You Know About Disciplining Kids Was Wrong?, by Katherine Reynolds Lewis at Mother Jones.

* This Is Why I Boycott Autism Speaks by Erin Human. I drew this image for a Boycott Autism Speaks flashblog last week and it’s been the most “viral” post of any kind that I have ever created. Much love to those who shared it.

Spoons, Splines, Executive Function

Autism, Identity, Neurodiversity

I’ve been wanting to write a blog post about executive function for several weeks. The funny thing is, compiling the information and the writing such a post requires significant executive functioning effort, and I haven’t been able to muster it. Fitting!

Executive function (EF) is hard to explain in a simple way because it does so many things. Some call it the command center of the brain – it is responsible for things like decision making, planning, problem solving, attention, working memory, verbal reasoning, transitioning, time management, and more.

Take for example one ordinary task that many people do almost every day: making dinner. There are so many executive functioning tasks just in making a simple dinner it’s difficult to list them all, but they would include: deciding what to prepare, determining which ingredients are needed, locating them all, calculating how much time each component (also the entire meal) will take to make, measuring or chopping ingredients, doing everything in the proper order, paying attention so that nothing is underdone or overcooked, dealing with distractions, serving appropriate portion sizes, locating appropriate plates/bowls/flatware….

Do you still have the energy to eat?

Cooking dinner is a relatable example, which is why I used it – lots of neurotypical people find preparing a meal to be a bit taxing, at least sometimes. But if you are neurotypical, try to imagine if nearly everything about your day was that labor-intensive for your brain. Taking a shower, getting dressed, making plans for the day, keeping yourself (and everyone in your care) fed, tidying up, and so on.

Having some executive function challenges is common to autistic people, but also to other atypical neurologies, such as ADD/ADHD, depression, and some learning disorders.

Image is a basket full of white plastic spoons, and over that are the words, “Everything that I commit to has to be considered in the bigger picture of whether I will likely have the energy to do it that day, week, month.”

There’s a popular metaphor that a lot of disabled people refer to called Spoon Theory. I’m aware that not everyone loves this metaphor, but it’s so well known it’s worth knowing about because you will probably come across it eventually. Spoon Theory was invented by a woman with lupus to explain to her able-bodied friend how she must conserve her energy in thoughtful ways, because she does not have an unlimited amount, and every single thing she does has a cost. The disabled person has a finite number of spoons to “spend” in a day, and depending on their disability, each physical task, executive functioning task, social interaction, sensory experience, and so on – will deplete their number of spoons.

There’s another really good metaphor that an autistic person came up with, and I think people with ADHD will also relate closely to this, called Splines Theory. The phrase “reticulating splines” is a gamer inside joke – a made-up term that some old computer games used for their load screens. Splines Theory aims to explain why autistic people may need a lot of time and energy to “load” a new task, and may then become hyper focused on the task, and have a difficult/impossible time dealing with interruptions or moving onto another task.

I feel that in the past year I reached a state some call “autistic burnout,” which is what precipitated my seeking a diagnosis and more support. I sometimes feel like my executive function has collapsed. It’s like a toddler in a meltdown who goes limp-noodle and suddenly weighs a thousand pounds. It’s like a dog on a leash who refuses to go another step and seems to turn his body into stone. I stubbornly believe I can do more, but my brain says NOPE. NOT DOING THAT.

Other times it rallies and I can do the thing, and I feel like I’m totally doing it, but then my brain collapses. It takes me hours sometimes to recover from ordinary tasks or outings that are not physically or mentally taxing in better days. But right now, they just are.

I am now throwing all of the self care resources in the book at myself in order to get out of survival mode, or what my therapist has described as “the basement level” of functioning. I am taking care of my family and myself in a basic way, and I’m handling some responsibilities on top of that like illustration work and the co-op startup, but I am tired all the time and EVERY thing I do takes tremendous effort. That includes things I really want to do, which is so frustrating.

Even though I don’t have a physical disability, the concept of limited resources feels all too real to me at this time in my life. If I go to a playdate in the morning, I will not be able to go grocery shopping in the afternoon. If I have a meeting scheduled for the evening, I have to structure my day so that I am not doing much before then. Every thing that I commit to has to be considered in the bigger picture of whether I will likely have the energy, the spoons if you will, to do it that day, week, month.

At the same time, becoming aware of my executive functioning challenges gives me new hope. So many times in my life I’ve beat myself up for failures big and small: why couldn’t I hack it at art school? Why didn’t I do more in college? Why couldn’t I do better as a faux finishing contractor? Why aren’t I earning a decent living as an illustrator? Now I have this fuller knowledge of myself that I can use to build upon my strengths and stop trying to force myself to operate in ways that are not good for me.

I am now seeking help in various ways, but I also have to face the stark reality that I cannot rush a recovery from burnout. The whole point of this is that I need to slow down and have been rushing and pushing too much. Working with my neurology instead of fighting it is a key to moving forward but I am still figuring out how exactly to do that.

Infodumping is My Love Language vol. 3

Infodumping

Infodumping* “With writing, though, none of this applies. I’m so free. This whole post, for example, would have been very hard to convey if I had to ‘tell’ it to you aloud. When my fingers are on a keyboard, or screen, or writing utensil, the real me emerges so readily. I’m free. Not that the ‘me’ that is there when I’m in person isn’t real; it is. But just less certain, less meaningfully communicative, less…me. Kind of like a person speaking a foreign language. You can live in a country for 20 years and the language of that land is now very familiar to you. You now speak that language quite well, but it will never come with the ease and natural comfort of your native tongue. In your second language you might be ‘good,’ but in your native tongue you are almost ‘great.'” – Why I Don’t Like All Those ‘Get Off Social Media and Into the Real World’ Posts, at Just Being Me… Who Needs ‘Normalcy’ Anyway?

Emma: I believe this is a picture of that subtle, female emotion called “mascara.” Melanie: “If I blink, I might die.” Actual Test Answer: “Desire” – The ‘Reading the Mind in the Eyes’ Test: A Collaborative Critique, at Lemon Peel.

* “But as we see in the last scene, more and more of Riley’s memories are colored by two emotions at a time. That got us wondering what the many blends of Riley’s five core emotions might look like. What happens when fear is combined with disgust? Or when anger is combined with joy? Here’s our best guess, in graphic form from Christophe Haubursin.” – Chart: How Inside Out’s 5 Emotions Work Together to Make More Feelings, at Vox Culture.

* “It turns out that unexpected things drain my spoons via a slow-drip leak. The sound of hammering all day as my neighbor’s house is getting a new roof? Sensory spoon leakage. Sitting in one position for too long? Physical activity and sensory spoon leakage. Listening to a radio program while I work? Language spoon leakage. Cursing out the bank’s confusing phone menu? Executive function spoon leakage.” – Conserving Spoons, at Musings of an Aspie.

* “Another Nobel-winning economist, Amartya Sen, posits that political repression impedes economic growth — that prosperity requires that social and economic well-being be tethered to democratic values. Escuela Nueva turns the schoolhouse into a laboratory for democracy. Rather than being run as a mini-dictatorship, with the principal as its unquestioned leader, the school operates as a self-governing community, where teachers, parents and students have a real say in how it is run. When teachers unfamiliar with this approach are assigned to these schools, it’s often the students themselves who teach them how to apply the method. ‘In these schools, citizenship isn’t abstract theory,’ Ms. Colbert told me. ‘It’s daily practice.'” – Make School a Democracy, by David L. Kirp at The New York Times.