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

Autism, Neurodiversity

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.

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*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.

Three Strokes to One: Social Situations

Autism, Identity

One of the metaphors that my diagnosing psychologist used to illustrate the exhaustion of being autistic in an allistic (that is, non-autistic) world is about paddling down a river. All of the neurotypical people are sitting in their kayaks paddling along with the current, but the autistic person is paddling through a current that runs in the other direction. For every one stroke the other kayakers paddle, the autistic kayaker has to paddle three strokes just to keep up.

It’s not a perfect metaphor, but I think it does speak to the extra effort that goes into much of daily life for me, especially social interactions and aspects of executive functioning (I’ve promised to explain executive functioning in more detail in a later post and I will – it’s a big topic).

When I was younger, I relied on scripting a lot. There are different kinds of autistic scripting, one involving repeating long strings of dialogue/narration from TV or books, but the kind of scripting I mean is that I would craft a script in my head before speaking, sometimes hours or days before interacting with someone, sometimes on the fly if needed – but it still took me extra time to work out what to say.

Throughout school, right into college, I consistently received feedback from teachers that I should participate in class more, because when I did, I had insightful things to say. What I couldn’t have explained was that the problem wasn’t lack of interest, or even shyness, but the difficulty of scripting on the fly in a class setting. Usually I would take so long to perfectly craft my script, that the conversation would have moved on by the time I was ready to say it. Sometimes it just didn’t seem worth it to try.

Now, I’ve had half my life to figure out getting by in the neurotypical world, so I am pretty good at it, good enough that most people won’t notice anything remarkably different about me, but it’s still tiring. Essentially, I have to do a lot of things consciously and deliberately that neurotypical people do naturally without thinking about it. Imagine if you had to tell yourself, “Breathe in. Now breathe out. Now in. Now out,” all the livelong day! Well, that’s a bit what it’s like for me to just operate in the world and talk to people. I am very, very used to it, but it still takes more effort than it takes most people.

I’ve known for a while that introverts find social interaction draining, and need alone time to recharge. That makes sense to me and for a long time I thought it was a sufficient explanation for my social needs. But within the past year or so, the degree to which I am drained by social interaction, and the time and the extent of withdrawal needed for me to recover, have become more and more obviously out of the typical range of introversion.

These days, after I spend some time socializing, say two to three hours, I probably need the rest of the day to keep mostly to myself. That might even last into the next day. If I overdo it entirely, it could literally take days for me to feel back to normal.To give you some idea of what an ordinary social interaction is like for me, this is what might be running through my head if I’m talking with casual acquaintances, or new friends, all the while I am trying to actually participate in the conversation in a meaningful, engaging, and appropriate fashion:

I’ll sit down in this chair. Is this the right chair?
Am I sitting awkwardly? What do I do with my hands?
I should be smiling. Make eye contact. Do I look too serious?
Relax your eyes. You’re squinting. You look too serious.
Should I have offered them something to drink?
Does my shirt look weird?
They’ve asked me a question, ummm, did they mean x y or z by that?
I tried to answer, did that make any sense or sound like pure gibberish?
I can’t tell if that was stupid.
There is a pause, is it an awkward pause or a normal pause?
I’ll fill this silence with a mumbled something-or-other, did that make it even worse?
Is it my turn to speak? Is it theirs?
What do I say next?
I’ll take a drink to stall for time.
They’re looking at their phone, does that mean I’m boring them?
Argh remember to smile!

It probably is not at all obvious that I am doing this running calculation; in fact, though I often appeared very uncomfortable or shy in my teen years, in adulthood I’ve often been told I seem pretty confident. Nevertheless, that is happening in my head most of the time! I do that sort of thing even when I am among just close friends, though with less anxiety, and with family, except for Mike and my kids because with them I can just let it all hang out. So, yeah. It’s exhausting! But it’s second nature now for my brain to do that constant analysis of the situation in order for me to participate.

(By the way, this is why online communication is so much easier. I don’t have to worry about what my face, body, and tone of voice are doing, and the extra processing time is built right in!)

Part of what is freeing about “coming out” as autistic is just not having to hide all of my extra paddling anymore. I’ll still have to do some of it, but I think and hope that at least I will be able to shed some of the anxiety about acting the way I think I am supposed to. I will know that my friends and family will know I am just different, and hopefully along the way I can explain things like – hey, I really have no idea when I am supposed to hug you. If I look like I’m having a bad time I might just be elsewhere in my mind, or a bit tapped out. I care about you a lot but usually don’t know how to show it.

Admitting that this is what socializing is like for me is a little scary. It makes me feel vulnerable. In a way it would be tempting to continue to pretend I am just like everyone else, except that the price of doing that has become too high. It takes too much out of me. Another thing that has been difficult about socializing in my 30s as an autistic person is simply realizing and admitting to myself that my desire to socialize exceeds my abilities at this time in my life. I socially flame out quickly these days and that can be very frustrating, but part of taking care of myself and conserving my resources so that I can do everything I want and need to do is being realistic about what I can handle.

What Are You Reading? A Little of This, A Little of That

Books

I can’t believe how long it’s been since I last did a book post – apparently my last one was in February, so now I’m playing catch-up.

(This post contains affiliate links: book titles are linked to my Amazon Affiliate ID.)

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* This Is How You Lose Her by Junot Diaz. A series of short stories centered around the life of Yunior, a Dominican American young man living in Jersey – a womanizer, a cheat, a lover and a fighter, an asshole with a tender core. I found it irresistible the way Diaz played with my sympathy and my revulsion for Yunior, as he loved and lost and lost and lost. The juxtaposition of his depth and insight and loneliness with his shallowness and frequent contempt for women felt honest and real. Of course now I have to go find and read the rest of his work, including the Pulitzer Prize winning novel The Brief Wondrous Life of Oscar Wao.

* A Girl Is a Half-formed Thingby Eimear McBride. A very strange book whose stream of consciousness narration begins in the womb, with a fragmented and grammatically chaotic writing style, following the thoughts of a girl through her terrifying childhood, and through her tumultuous and heartbreaking adolescence. I was not surprised to read that the book was inspired by a reading of James Joyce’s Ulysses, which I haven’t actually read myself but I’m familiar with its style. A lot of people find A Girl is a Half-Formed Thing completely unreadable, and I understand why, though I was compelled to see it through and in the end I did find its story to be haunting and provocative. But I am still pretty baffled by the style of it – MY thoughts aren’t that disjointed and chaotic even at the worst of times, so I am not sure why this was the way to tell this tale, except maybe to distance us a bit from the horror and pain of it. Does that sound like a recommendation? I think few people would enjoy this one, but give it a try if you’re looking for something wildly experimental.

* Paper Townsby John Green. This YA novel is very John Green, so if you like John Green, you’ll like Paper Towns. What I enjoy about Green’s books is how well he captures that particular way that adolescence beautifully straddles self-centered, banal fixations and worries, and the biggest deepest questions about humanity and the meaning of life. I agree with the criticism some have made that all of his male narrators are kind of the same, but I’m not too bothered by that as I see the character as a teenage everyman and that works for me. In relation to his other books – THIS MIGHT BE MILDLY SPOILERY – I liked that Paper Towns did not employ the use of a dramatic tragedy to make its point; it was a little anticlimactic but still satisfying.

*Mud Seasonby Ellen Stimson. A memoir about city-slickers from St. Louis who move to small town Vermont and make themselves over as country folks, with mostly disastrous results. Stimson has a folksy sense of humor that sometimes made my teeth hurt, but she dropped enough F bombs into her tale to keep me going. Though she was self-deprecating and played her many failures for laughs, I couldn’t help cringing at how much she and her family behaved like bulls in a china shop in their new hometown – disrupting their peace with their fancy home renovations, buying the general store and running it into the ground (!!!), taking in farm animals with no clue how to care for them, and all the while looking down her nose at the locals. As a girl raised in a small tourist town myself, I often wanted to shake her silly. But I think it’s a fun read for New Englanders and others who can relate in one way or another.

* The Perks of Being a Wallflowerby Stephen Chbosky. This is an older YA novel, published in 1999 by MTV Books (?! who knew) and later made into a movie, which I haven’t seen but now would like to. I have to say I was deeply confused by this book and did not know what I was meant to make of Charlie, the teenaged narrator. He’s not just a wallflower, he’s extremely quirky at the very least – at times astoundingly immature and clueless, at other times implausibly insightful and mature. I could not decide whether Chbosky was writing a wildly out of tune version of what an adult thinks a high school freshman is like, or perhaps a dead on first person view as an autistic teenager??, though autism was never once mentioned. Near the end, an intimate conversation between Sam and Charlie nearly redeemed the entire book for me. I might have to reread sometime.

Frequently Asked Question

Autism, Identity, Neurodiversity

The most common question I’ve heard since I came out as an autistic person is, what was it about you that made you seek an autism diagnosis?

I’ve struggled to answer this because I feel like it contains several different questions and I’m not entirely sure which one a person is asking me when they ask it. (You might take note that struggling to answer a question because I am somewhat paralyzed by having to choose from all the many answers that I could give… is part of being autistic!)

So maybe I can unpack all of the questions within the question and answer them separately. This is what I think people might really be asking me when they ask me, what is it about you that made you want to find out if you have autism?

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What are your symptoms? We want specific examples of how you are different.

This one might be the trickiest to answer because although I have always felt different from most people, I can’t think in terms of “symptoms.” Autism is my neurology, it’s the way my brain is wired, not something I “have.” So while I have always felt different from most other people, I’ve always just felt like me. Maybe it’s actually you neurotypical folks who are the weird ones. Ha!

It wasn’t really having “symptoms” that made me think I was autistic, it was seeing myself with crystal clarity in the experiences of other autistic women. But if you want some specific examples of how I think differently, well. I’ll try.

Sensory sensitivities were the first thing that came to my notice via Musings of an Aspie. Being too cold until suddenly I realize I am too hot. Being uncomfortable in my clothes, just, all day. Being on edge, angry, snapping at people, only to realize that there is a background noise that’s actually causing my bad mood. A lot of people have sensory sensitivities without being autistic, but I mention them because realizing what mine are and being able to manage my environment a little are key ways for me to feel good and do the things I need to do.

The longest running issue for me that has caused me the most pain in life is issues with social communication. Many people who read my blog and some on Facebook have mainly interacted with me via written word – this is where I am at my best, communication-wise. So the idea that I have trouble communicating may seem absurd. But verbally, in person or on the phone, I do. I wrote a whole separate post on that because it’s big and complex, but in a nutshell, I never really know what to say, what’s appropriate, what’s expected of me, where to begin and where to end, and a lot of times I just kind of shut down and go blank in social situations. This has always prevented me from achieving the kinds of connections I’ve desperately craved. And sometimes it is so discouraging or just plain exhausting that I don’t even try. So that can be challenging.

And the last area where I feel the most “different” is in executive functioning. I can detail that in yet another post, but the gist of it is that executive functioning is kind of the command center of the brain, the part of you that organizes, plans, prioritizes, executes, and manages all the little and big things you have to do in life. The simplest way to explain why executive functioning is sometimes a challenging area for me is that I get overwhelmed quickly, easily, and often.

But what was wrong, really – were you suffering?

That is a pretty personal question and no one’s outright asking it, but maybe it is implied. All I can say is, I was getting by, as I have always gotten by in life as an undiagnosed autistic. But I felt that getting by was not enough anymore as I have a husband and two kids who need me to do better than just get through the days. I have other family members I long to connect with more than I have. And I have things that I want to do that require me to get out of survival mode. Of course this diagnosis is for myself, but it’s also for all of the people who love me, and whom I love, too.

Am I autistic too?

There are a few people who are curious “what about me” is autistic because they think they might be autistic too. No, not everyone is on the spectrum, but certainly some people are out there who are undiagnosed but autistic. Women especially tend to be underdiagnosed and the big discrepancy in the numbers of male and female autistics is most likely due to underdiagnosis in females. So what I tell people who seriously think they might be autistic and seem to have a strong need to find out is, it’s worth looking into. I am really glad I did.

I also caution you that it can be expensive to get diagnosed, so look into what your insurance will cover, and women should try to find professionals who specialize in diagnosing women with autism, because not all of them recognize autism in women well. Autistic women are more likely to be misdiagnosed with depression, anxiety, OCD, ADD, etc. Don’t let that scare you off, but be aware of it.

If you want to read more, these links might be helpful:

Essential Reading from Musings of a Aspie

Underdiagnosis in Autistic Females from Seventh Voice

The RAADS-R is designed to be used in a clinical setting but you can try it at home

The Aspie Quiz is another interesting self assessment tool

But why did you feel the need to label yourself this way?

I suspect that what some people mean when they ask this question is, why would you want to be known as autistic when you can easily pass for “normal?” If you ask this, you are assuming that autistic is a bad thing to be, something no one would want to be if they had the option to choose. It’s not. And you are also discounting the stress and the depression associated with “passing,” which for me have come to outweigh the stigma of autism.

If you are secretly wondering why I would want to label myself, I understand why you feel that way, because I once felt the same, until I learned more about autism, which is widely and unfortunately misunderstood.

amI

Autism is not a disease or a kind of brain injury, it’s a neurological variant. It’s genetic, inheritable, and has always been part of the human species, but is only now being accurately diagnosed. It is also, however, a real difference in neurology and not just a personality profile. I’m not “just quirky,” my brain actually works differently from the neurotypical brain. It’s not better or worse, it’s just different. (Autistic self-advocates do not deny that autism can be disabling to varying degrees, but that still does not mean there is something “wrong” with any of us. Disability is a normal part of the human experience.)

So I feel a need to label myself this way because this is the way I am. I am not ashamed of it. Sometimes I am proud of it. But essentially it is a neutral facet of my being. Being my true self gives me immense satisfaction, as I think it does for anyone. Oprah made a cliche out of “Living Your Best Life,” but that’s because the idea of authenticity resonates with so many people. And for me, realizing, accepting, and declaring that I am autistic is a path to authenticity. Autism is not *everything* about me, but it’s an integral part.

So if you ask me why I want to label myself this way, to “come out?” – my honest answer is, why wouldn’t I? Why wouldn’t I want to exist in the world as my authentic self? Why wouldn’t I want people to know who I really am? Why wouldn’t I want to be free?

The only reason why not is fear. Every person who lives in a closet for one reason or another has to balance the fear of coming out with the pain of staying in. That fear has legit reasons so I don’t judge anyone for staying in. But I’m coming out.

Neurodivergent

Autism, Identity, Neurodiversity

ananswerYou may or may not remember that I made a passing mention, in a This & That post last fall, of reading and relating to a post on the blog Musings of an Aspie. What I didn’t mention after that was that I continued to read Musings of an Aspie, and I continued to see myself in Cynthia Kim’s blog, and it didn’t take me long to begin to really wonder, was I on the autistic spectrum after all?

Meanwhile, I was struggling to understand why I was feeling the way I was. Tired all the time, flaring up with a hot temper at the littlest things. It didn’t make sense to me that I was so exhausted and edgy and irritable even when I was getting enough sleep, even once I pared down my lifestyle to something very manageable and slow paced, even when I scaled back my workload, even as unschooling took a lot of pressure off my parenting, even though I basically love my life and have a great husband and good friends and adore my kids. Why did things still not feel right? And that dissonance was not a new feeling, as in postpartum depression, but something that I’d always felt to some degree, but gradually became too intense to ignore anymore.

In the months between then and now, I read and researched and learned a LOT about autism in women and how that looks different from what most people think autism looks like (for complicated reasons – I can explain more another time). I formed a support group for autistic women and women who, like me, were thinking they might be autistic, where we could share experiences and ask questions and sort everything out in a safe and supportive space. Those new friends of mine have been invaluable – I appreciate them so much.

Finally, I found a local psychologist who specializes in seeing autistic women, and I went to her for an assessment. It’s worth pointing out that this process can be very expensive and I wouldn’t have been able to do it if we hadn’t had the good health insurance that we do – I wish that more people had access to the psychiatric care they need, but it’s not always so easy.

I was incredibly nervous about the assessment – I felt vulnerable and even a little humiliated just by undergoing a psych eval – and was honestly scared that I would not get diagnosed with autism. Why? The idea of being autistic was like a missing piece in my life that suddenly made everything make sense. I was terrified that if it was taken back out of the picture, I would be left with the same old confusing mess as before.

But I did, in fact, receive a diagnosis of autism last week. It’s official. On the long drive home from my final evaluation appointment, I cried tears of relief and release.

I think I also cried a little for all the me’s I’d ever been – the shy little girl, the misfit teen, the lonely young adult – and what could have been if only I’d known then what I know now.

The psychologist also told me that my results showed chronic dysthemia, a low level depression that’s always been with me and explains a lot of why my energy level tends to run so low. In her view, the difference between neurotypical and how neurodivergent a person is tends to get “colored in” by depression and/or anxiety. This made a lot of sense to me as basically my efforts to meet the neurotypical world on its terms every day result in fatigue and vague sense of never being “enough.”

I know this will be surprising to a lot of people, and I understand why – I was surprised when I first realized that I might be autistic. I think this is largely due to the fact that very few people, besides people who are actually autistic, know much about autism – which several people have told me since hearing my news. But I can tell you that for me, it just means a huge weight has lifted off my shoulders. Knowing that I am, in fact, a perfectly normal autistic person, makes everything just slide into place. It’s an answer to a question I didn’t even know I was asking for the first 36 years of my life.

On Conquering Creative Fear

Creativity, Writing

Erin5two

When I was a little kid, probably only five or six as I was just beginning to be ready to sleep over at a friend’s house (and for sure there were some midnight calls home to my parents to come get me), the prospect of a sleepover with my best friend and next door neighbor Bethany was pretty much the most exciting thing I could think of. Whenever Beth or I would come up with the plan to have another sleepover, the very idea of it was so thrilling it was almost too painfully awesome to contemplate (even though we spent almost every day together and lived about 40 yards away from each other).

But sometimes our parents said no, for reasons incomprehensible to our kindergarten minds. Then, the disappointment was too devastating to bear (even though we spent almost every day together etc). So I came up with a plan: we would always just assume the answer was going to be no and start feeling sad about it before we even asked our parents. That way if they said yes, we’d be super happy, and if they said no, we’d feel pretty much the same. I felt that this plan was BRILLIANT. It’s etched so vividly in my mind as a stroke of utter genius that I can even remember exactly where I was standing when I revealed my amazing idea to Bethany – right on the border between our yards, near the tree that was shaped like a W.

As a Sleepover Disappointment Coping Strategy, it was pretty decent, but as an approach to life in general, I’ve got to tell you, it’s pretty lousy.

All too often in my life I have followed this protocol of protecting myself from disappointment, rejection, and failure by assuming things are not going to work out. I am probably in the running for an Olympic gold medal in Emotionally Dealing With Bad Things That Haven’t Even Happened Yet. Focus too much on what will go wrong, and eventually you don’t try so much. Don’t try so hard. Don’t dare.

What does all of this have to do with creativity? Well, it all comes down to fear. Fear of failure is something that lots of people deal with, probably all people at some point in life. I think fear of risk is something slightly different, and it’s even worse. Fear of failure means being afraid of the moment you crash to the ground. Fear of risk means being afraid to even leap. It’s a fear of being vulnerable at all. An addiction to safety. Unfortunately for safety junkies like me, being creative is ALL ABOUT being vulnerable. It’s taking something that you made and putting out into the world – it’s inherently risky. Giving form to your ideas is like exposing parts of your innermost self. Even if no one ever sees the things that you create, I feel that there is a risk in just bringing them into being.

fearmeme

Today is the last day of my 12 week course on “creative recovery” with The Artist’s Way, and in a bit of synchronicity it will be the last of my posts on creativity for the month of March (though I’m sure it’s a topic I will return to now and again). When I started the process of reading the book and writing the journal, I was skeptical of the idea that I was a blocked artist. I thought, I am an artist, I just happen to be TOO BUSY right now to create the things I want to create. Uh huh.

Much of The Artist’s Way for me was about admitting to myself that I really am afraid to make the things I want to make. It’s much safer for me to keep them inside and just keep telling myself I don’t have time for them, yet. Sure I have time to write a couple of blogs and moderate a few Facebook pages and do commission work as an illustrator and raise and homeschool two kids and start a co-op, but write a memoir? Nawwww. Draw a comic book? If only!

Though I did, through the exercises in the book, trace some of my personal insecurities back to comments that influential people have made to me along the way, ultimately I know that the buck stops with me. My fear can’t be placed at anyone else’s feet. I know that it scares me to be vulnerable and I’ve always been that way. But I am beginning to let myself set fear aside long enough to taste that excitement of doing the things I really want to do, as thrilling as letting myself anticipate a sleepover with my best friend when I was five.

On Doing Things Badly

Creativity, Writing

A lot of people talk about “failing well,” and I do love the concept. But, maybe this is just a linguistic quirk of mine, the word failure does not resonate with me a whole lot when it comes to creativity.

I see failure as a binary possibility – pass/fail, success/failure. You fail a test, fail a class. It’s a kind of non-doing. You did not meet the criteria or measurement of success. You failed.

What happens in the creative process seems less black and white, and definitely involves doing. Doing it badly perhaps. When you write a poem that just isn’t working, make a painting that doesn’t feel right, when your rhythm is off, when the solution isn’t coming to you, this may feel like failure. But it’s actually part of the creative process. It’s discouraging and frustrating, sure, but those clunky bits still have value.

Going back to the Facebook conversation I had with my friends and family and again back to my brother’s advice – he said that he believes the more you fail, the more you learn, though it may not feel that way at the time. He used the phrase “hidden knowledge,” which I love, to describe the learning that may go on beneath the surface when you are doing something badly or feel like you are failing. My brother Ryan is younger than me but I look up to him as an artist. I don’t know anyone more hardworking and creative when it comes to following their passion (you should check out his solo work as well as the duo Kodacrome).

Doing things badly is, in fact, an essential and inescapable part of the creative process. As much as I wish it were, it is not possible to be excellent the first or second or tenth time you try something. It’s a cliche, because it’s true, but think of a child learning to walk and how many times they fall as they learn. Most people are able to do some invisible work – mental problem solving, visualization, imagining – to help develop their skills, but there is always going to be some hands-on practice, and you know what they say about practice. That it makes perfect means you will spend a lot of time being imperfect first.

You absolutely have to be willing to do it badly for a while if you want to do something well, or do it at all really. It’s the doing that must be your focus, not your skill level or successes. In November, I set about writing a novel for NaNoWriMo knowing that it would not be good – why? I had never written a novel before. Hell, I’d only written a handful of short stories, back in college! I had almost no practice writing fiction so there was no reason I should expect to magically be great at it. I told myself I surely had at least one bad novel in me that I’d have to get out in order to find a good one. So that’s how I moved forward.

That doesn’t mean you don’t push yourself to do your best, but if you aren’t willing to make mistakes, you won’t even be able to begin. Failures will paralyze you. The pressure will stunt your growth.

I’ve not read any Malcolm Gladwell yet but I know that he is famous for writing that it takes 10,000 hours of practice to achieve mastery in any skill. This intuitively sounds right, though I don’t think we should be TOO literal about the numbers.

I do think of two problems with this theory. What are the two things that first come to mind, free association style, when you hear that 10,000 hours concept? Mine are Tiger Woods and piano. One problem with the 10,000 hours idea is that it makes us – or at least me – think primarily of technical skills. I don’t think of writing or drawing or singing or acting – things that, I suspect, we tend to think people are either born “good” at, or not. But in fact everyone needs to practice their skill to achieve mastery (or anything close to mastery).

The other problem is that the number 10,000 is overwhelming. If you do something one hour a day, it will take you 27 years to get to 10,000. I’m not so great at math, but I think that means that if you manage to practice your skill for four hours a day, you’re still looking at almost 7 years of practice. If you are, let’s say, a busy mom unschooling two kids and working at home and just beginning to work on your passion, you might think, EGADS, I have decades ahead of me to actually become good at this!

Here’s an antidote to that toxic thought spiral, from The Artist’s Way:

Do you know how old I’ll be time the time I learn to ______ ?
The same age you will be if you don’t.

On Working Through Dry Spells

Creativity, Writing

Last month I got super excited about writing about creativity all through March, and sketched out a posting schedule and topics I wanted to write about, but then, life happens. My flow was interrupted by the anxiety of waiting for my grandmother’s passing, by making travel plans, by traveling and being with family and all of the swirling thoughts and feelings that that entails, and by the busy schedule that awaited me when I came home. (I’m not always so busy, but busyness happens from time to time.) Before all of that, I was talking on Facebook with various people, including my brother Ryan and cousin Tricia, about the creative process and how to tap into that flow of authenticity and what to do when you can’t. Tricia reminded me of the Pablo Picasso quote, “Inspiration exists, but it has to find us working.” Ryan compared being an artist to being an athlete – you have to practice a lot and stay in shape.

There have been plenty of times when I’ve considered chucking this blog. It’s not REAL writing (whatever that is). I’ve worried that it’s distracted me from REAL writing (whatever that is). Or sometimes just having all of these thoughts of mine preserved in internet amber gives me the heebie jeebies and I want to somehow bury them and run away. But ultimately I think I keep blogging because this is my practice. This is how I stay fit and active, creatively. I just keep writing, and sometimes it’s just writing for the sake of writing and other times I get to tap into that Source and write something that feels real and whole. I try never to publish anything that feels totally wrong. But it doesn’t all have to be great, and having a low pressure outlet like this is an essential tool in my process. I have other outlets – I have been keeping a journal for a few months, hand written, where I write ANYTHING that comes to mind, good, bad, silly, anything. I’ve been dabbling in very loose memoir comics, keeping them super casual and just for fun. I think it’s also good to have outlets that are NOT directly related to your creative pursuits, though that’s something I’ve not been keeping up during the winter very well. Getting your body moving and/or doing physical work with your hands can get your creativity flowing in surprising ways. I enjoy doing yoga, tidying or reorganizing the house (spring cleaning is my JAM), taking walks with the kids when it’s nice out. I’m a pretty indoorsy and sedentary person but I do appreciate the way getting out of my head for a while can refresh and reset my mind.

Ultimately it’s about maintaining forward momentum when you hit a dry spell in your work. Don’t get paralyzed. Believe that you’ll hit your stride again and until then you have to just keep going in whatever clunky way you can manage.

A Month on Creativity

Creativity, Identity, Writing

Erin5four

Drawings I made at age five.

I believe that all people are creative. I know many disagree with that – often it’s the people who think they themselves are not creative. But creating simply means bringing something into the world that was not there before – it might be a drawing or a song, or a mathematical proof, or the execution of a football play, or just a solution to a problem.  Creativity is part of being human. The idea that we are “not very creative” is a story we tell ourselves, and it is false.

I do believe that everyone possesses this well of creative energy. It doesn’t mean that everyone is a genius or a master of something. It doesn’t even mean that everyone has to “do what they love” as a job. It just means that everyone is born with the ability to make something out of nothing. People themselves are works of creation, of course – a baby is a new person who never existed before.

I’ve always taken a special interest in children’s drawings – not just my own or my children’s. Nearly all children begin to draw at some point in their development; it’s a preliterate form of expression that has been with our species since before we invented an alphabet. Before adults begin to interfere with the process, all children – not just the “artists” among them – have a natural sense of composition and form. Ironically, it’s when formal instruction is introduced that children tend to lose that innate sensibility, and trying to get their drawings “right” is something that cuts them off from their own creative powers.

Erin5one

Another of my drawings from when I was five years old.

Last month I was at the local art museum with Mike and the kids and we went to visit the water fountain at the same time that a school group was there drawing the fountain – I would guess they were about second or third graders. I was surreptitiously watching them draw for a few minutes, though it seemed most of them had finished their pictures by the time we arrived. The students whose drawings I loved the most had a kind of confidence and immediacy to them – some done quickly, some undertaken with more care and time, but the best ones to me all possess a sense of freedom and uninhibitedness that can’t be faked.

I saw one girl, on the other hand, who had drawn a few timid lines, looked around at her neighbors, caught me watching her, and began to furiously erase her work until she literally ripped a role in the paper. Past a certain age – maybe kindergarten age? – I think there are always a few of these types of kids in any group. Sometimes they are in fact the Artists of the group who have been singled out by parents or teachers as being “good at drawing,” but sometimes they are at the other end of the ability scale, the ones who have noticed or had pointed out that their drawings don’t look as good as the other kids’.

Later that day when we were in the kids’ art space at the museum, I gestured to the wall of children’s drawings, things that had been done there in the museum and pinned up, and asked Mike to guess which one I liked the best. It wasn’t the most realistic, the painstakingly “shaded” close up of a flower, the most technically advanced, the one that probably 9 out of 10 kids or adults walking by would instantly pick out as best. It was a delightful still life, done in a simple line drawing style, terrifically out of proportion, the perspective nothing close to reality, but it was alive, and made perfect sense in its own little world on the page.

That drawing had the sort of energy that most adult artists try to tap back into for the rest of their lives. When I was a freshman at RISD, my first semester drawing teacher had us sit and scribble in large newsprint pads for the first 20 minutes of every class. We were not to draw anything representational or try to make it look “good,” whatever that might mean. When I was 18, frankly, that exercise was baffling and frustrating to me – I was there to make “good” drawings, why was I scribbling? – but now I totally understand it. To make something good, it must be real, and to make it real, you must let go of making it good. It’s at the heart of why early childhood drawings are so fantastic. They are not focused on making Art, they are purely making.

I’ve decided to write on the theme of creativity in this blog for the month of March. It’s something I’ve been thinking about quite a bit lately. Right now I am still reading and doing the 12 week course for The Artist’s Way and at the same time have also been reading Sir Ken Robinson’s The Element: How Finding Your Passion Changes Everything. There is considerable overlap between the two books so it’s been fascinating to read them simultaneously. At the heart of them is the idea that tapping into your passion – whatever form your personal expression of creativity takes – is to tap into your authentic self.