Not In Love With Julia

Autism, Neurodiversity

Everyone might be tired of hearing about Sesame Street’s new autistic muppet by the time I post this, but before I wrote up a full review I had to make my way through all of the materials at the “Sesame Street and Autism” site. I watched all of the videos, either when the kids weren’t around or with headphones while they were otherwise occupied, because I wanted to screen them first before I let them view of it – and, yes, it is weird to have to screen Sesame Street, of all things, for harmful messaging, but such is the state of the mainstream dialogue on autism that I knew there were likely to be some things I would not want my kids to see or hear. And there were.

What is Sesame Street and Autism?

First, a brief explanation of what Sesame Street and Autism is and isn’t. There’s been a lot of hype about Julia, the new autistic muppet as I call her and “muppet with autism” as most of the press does. However, there is no actual muppet. There is one storybook, told from Elmo’s point of view, about a cartoon muppet named Julia. The rest of the site is “Resources for Parents,” which include: 10 videos – I would say 5 were mostly or sort of geared toward children, 5 geared toward parents, ALL geared toward neurotypical viewers; some short articles – 5 out of 6 are for parents, the 6th is for neurotypical children; and Daily Routine Cards, which are like short social stories, that could work for any child.

There is no balanced view of prejudice

For this project, Sesame Street gathered input from a couple of good sources, including ASAN (Autistic Self Advocacy Network) and Boycott Autism Speaks, and some ableist sources, which I prefer not to name because I find that the mere mention of them always derails the Sesame Street discussion into “but why don’t you like them?” and it’s not what I want to talk about here.

The problem for me with this project is that you can’t “balance” autism acceptance and positivity with ableism. The ableism corrupts the message of acceptance and makes it unusable at best, and counterproductive at worst.

Lost opportunity to do good

It’s sad because I really wanted to like it. I think having an autistic muppet IS a good idea and could have been awesome if done well. It would have been great if Julia was a real, felt-covered muppet, was part of the regular cast, and was the protagonist in her own story. It would have been great if she was fully incorporated into the show as just another character.

It would also have been great to do some of the live action videos about autistic kids, if the kids had been allowed to tell their own stories and interact with other kids and/or muppets on their own terms. It’s true that for this age range, there are many autistic kid who can’t yet tell their stories either by talking or by AAC (augmentative and alternative communication), but Sesame Street has always been able to work with typical preschoolers who don’t talk that much yet, so they know how to do this. There is no reason they could not do this with autistic preschoolers besides ableism.

It’s sad because there is a need for children to hear more about being autistic, inclusion, and making friends with people who aren’t like you. There is a need for more representation of autistic people in media and especially in kids’ media, because I would love for this generation of autistic kids to grow up feeling like they are accepted and part of the picture. (I love the Junot Diaz quote about reflection: “if you want to make a human being into a monster, deny them, at the cultural level, any reflection of themselves.”) I would have loved to be able to show my kids a good Sesame Street video about being autistic, but it’s not here.

Where they went wrong: a breakdown

As I said, I watched all the videos and read all of the articles and looked at a few of the Daily Routine Cards on the Sesame Street site. Throughout all of their material, they use “person first language” or PFL (person with autism, so-and-so has autism) rather than “identity first language” or IFL (autistic person, so-and-so is autistic) despite the fact that most autistic people prefer IFL. With that, they didn’t even attempt balance. PFL happens to be a total deal breaker for me. I can’t imagine ever telling my kids that I have autism or you have autism, because in that language, it sounds like I have a disease or a disorder, which I do not. I am autistic, which is the way I am and the way I experience the world.

Even if I could swallow PFL, there was plenty else that bothered me throughout the Sesame Street site. I’m going piece by piece to explain exactly what the problems are because I know that the uninitiated might not see what is “wrong” with this stuff at first glance, but I hope that if you are one of those, after reading this you’ll consider another point of view.

The Amazing Song

“The Amazing Song” was all right, and one of the few things on the site that I put in the “would show my kids” category. It wasn’t great but it wasn’t terrible, which is the highest praise I can give anything here. I love the footage of happy flapping autistic kids and the message that “we are all just kids and we all want to play.” The message of othering is not as prominent here but it’s still present in the lyrics “it’s harder to reach out as others do/ but when you just look closer you’ll see amazingness show through.” Whose point of view does this represent? In the second line it’s clearly the neurotypical person as the default narrator, just as it is in ALL of the material on Sesame Street. Even this song speaks to neurotypical children as the default audience and excludes autistic children. Bummer.

We’re Amazing 1,2,3

This digital storybook is the only place where Julia the autistic muppet appears, as a cartoon drawing. And yet, the book is told entirely from Elmo’s point of view, as he explains the things that Julia does and feels. Given the creative freedom of a fictional cartoon storybook, how is it that even in this format the autistic person can not be the narrator of their own story? Sure, most children are not autistic, but is that a good reason to sideline autistic children into always being the object of the story and never the subject? Sesame Street could, and really really should, do better than that.

Benny’s Story

Benny’s Story is a short cartoon and it is just okay. Aside from using PFL, it uses some positive language about being autistic. But Benny is really separate from the other kids and is never shown belonging to the group. It’s true that autistic kids like playing alone sometimes, but what about when they don’t? This video seems to emphasize being different a little too much. However, it is the ONE video told from an autistic point of view, albeit an autistic cartoon resembling a clothespin with a face. So, there’s that.

Thomas’s Story

This live action video about an 8 year old named Thomas had some great moments – showing how Thomas appreciates the little details of his environment, showing him using AAC to communicate, showing how he uses a service animal on outings.

But the bad moments were really bad, and I think are likely to trigger PTSD in some autistic adults who might watch this video. The worst bits were when Thomas’s dad keeps yanking him down by a leash at his waist when Thomas gets excited around the Abby muppet – I think this leash’s main purpose is to keep Thomas connected to his service dog, but the dad uses it for unnecessary restraints and that’s disturbing. Can you imagine a Sesame Street video where a parent claps his hand over his child’s mouth when the child starts speaking too loudly? – that’s more or less the equivalent of what Thomas’s dad does to forcefully quiet Thomas’s body language. After that, Thomas’s dad corrects how Thomas hugs Abby by taking his arms and moving them to do a hug the “right” way, which is also just yuck. And I wasn’t crazy about having the camera intrude on Thomas’s alone time when he said he needed a break.

But the larger problem with Thomas’s story is that it is told about Thomas by neurotypical people (and muppet). It’s very othering. Thomas has the ability to communicate through AAC; at the end of the video he gets a chance to chat with the muppet Abby, and he has a little back and forth with her. This could have been the main narrative, and should have.

A Sibling Story

Aagh! I just about jumping out of my skin seeing Yusenia’s sisters help physically restrain her so that her parents could brush her teeth and hair. Later in the video we see Jaslyn, one of the sisters, prompt Yusenia to stay calm when she excitedly goes to hug Abby the muppet. This video was aimed at kids but I would never it show it to mine, or really, anyone. Coercion and physical force are not normal parts of an autistic kid’s life.

Being a Supportive Parent

A video aimed at parents, this one featured Yusenia’s dad talking about supporting his wife because in raising an autistic child, “there’s probably not a day that’s not stressful.” (As opposed to life raising typical children, which is nothing but unicorn farts and rainbows from sunup to sundown, right?) The worst part of this one was when they showed footage of a very unhappy looking Yusenia at her 6th birthday party, the first year when she was able to blow out her birthday candle, after years of therapy. The dad is crying as he recounts this milestone, describing her as “typical fingers in her ears, zoning things out,” concluding with “it took her six years of her life to blow out a candle,” which is so dismissive and self-centered and, honestly, anti-autistic, that I just… You know, Yusenia is not sticking her fingers in her ears to ruin YOUR experience of her birthday party, dad, she is doing it to cope with the noise and basically put up with everyone else imposing their preferences on hers, so, get a clue.

Family and Friends

Family and Friends is a story geared toward parents and told by two women who have been friends for years, and now have kids who play together all the time. One of the kids is autistic. I would probably show this to an adult neurotypical friend. It was not terrible and I liked some of the one mom’s statements about battling stigma: “I don’t want to ‘sell’ him to anybody, like, ‘he’s autistic, but….'” Still, given that Louie can be heard conversing with various people in the background of the video, I do not understand why he wasn’t allowed to tell any of his own story. It would have been great to hear a 6 year old autistic boy tell us about his life and his friendships, but as far as I can tell, he wasn’t even asked.

Nasaiah’s Day

This video about a 4 year old autistic kid could probably make my “would show the kids” list but I would have to explain to them that, no, Nasaiah does NOT have to learn to look people in the eye. (Eye contact is a neurotypical social convention but if it makes a child uncomfortable, he should not have to do it any more than wheelchair users should have to “learn” to climb the stairs on foot.) Other than that this was pretty cute and I loved his singing clip with Abby in the end. More like that, please!

Meeting Unique Needs

Here Nasaiah’s mom just talks about her frustrations in raising an autistic kid. Bummer, they seemed nice in the other one. I did not need to see this.

Family Time with Grover

This video was just so odd, I don’t know how to describe it. A lot of it is video of Grover with twin autistic boys and their older neurotypical sister, but that’s intercut with the parents talking about their kids and their parenting strategies, so I don’t know if it’s for kids or for parents. It wasn’t horrible but it was just more of talking ABOUT autistic kids rather than WITH them.

A Parent’s Role

This is a CLASSIC parent complaining video. It’s all about Dad and how hard his life is. “The challenges for me… You don’t get to do what other dads do… [Louie] doesn’t say I love you… It’s tough handling the stress… It’s very stressful and draining on [my wife]…” And then he ends with “it’s been a blessing.”

I’m going to say something I know is controversial, but parents’ complaints about how hard it is to raise an autistic child do NOT need to always be shown. They don’t need to be part of every conversation about being autistic. Parenting is hard sometimes, yes. But this narrative of suffering only strengthens the stigma that autistic people face in the world. It helps NO ONE. Not even the person complaining. And certainly not their child.

Can you imagine Sesame Street making videos of parents of typical children complaining about how difficult it is to raise their kids? Can you imagine Sesame Street doing this with parents of kids with other disabilities? Somehow it is unique to autism that the “parents’ lives are hard” story must ALWAYS be included. It really does not have to be included. There is a time and place to talk about how hard parenting your autistic kids can be, and it’s the same place you talk about how hard parenting your typical kids can be, how hard your marriage can be, how hard your friendships can be – privately, with trusted friends and family.

Read More

There were 6 short informational articles, 5 of them for adults, all of them for neurotypical people about how to interact with autistic children and/or their parents. “Being a Friend” for kids was pretty nice but it was totally geared toward neurotypical kids. There is NOTHING here for autistic kids. They are just erased. This tells me that Sesame Street does not think their feelings and experiences really matter. They never do tell their own stories and they never are addressed directly by the materials here. It’s all about autistic kids, but it’s not for them.

Daily Routine Cards 

Slightly misnamed, these are short social stories about everyday tasks like getting ready in the morning and crossing the street. They work for any young child as reminders and/or “what to expect” stories. They’re the only thing here that actually include autistic children as the part of the audience. So… meh.

The Bad Outweighs the Good

I’m an idealist but I do have a pragmatic streak. I know that massive social changes take time, and autism acceptance is no exception. Is Sesame Street a step forward? I would actually say yes, but only insofar as it is an opportunity to talk more, publicly, about how far we still have to go. It would advance nothing to say “Oh, Sesame Street has an autism initiative. At least it’s something, we’ll take it, let’s not throw stones.” Nope. Throwing stones is also a needed step in order to move autism acceptance forward.

These are my stones. This website is not good. There’s too much that’s bad tipping the scales toward ableism and stigma. I hope Sesame Street listens. I think they can still fix this. Go back to the drawing board (literally and figuratively) with Julia, scrap everything else. Yep, scrap it. You made an autistic muppet, awesome. I love that she does happy flapping and loves to sing. Make her a real muppet. Make her part of the Sesame Street family. Let her talk instead of just talking about her. Let autistic kids see their reflection in her and feel that they are real people too, not monsters. Let them tell their own stories. Sesame Street has always known how to let kids be kids and they can do it again, and they can start now.

We’re Pretty Awesome

Autism, Neurodiversity

You may have heard the saying, “If you’ve met one autistic person, you’ve met one autistic person,” which is meant to emphasize how unique each autistic person is. (In less benign cases, it is sometimes used to shut down criticism about a type of autism therapy or treatment – the autism equivalent of Y’ALL DON’T EVEN KNOW ME.) (Also I know this saying is often worded in person first language but I can’t bring myself to write it that way.) Aside from the fact that I find this a weird saying to begin with (EVERY person is unique, why would anyone expect all autistic people to be exactly the same?), I always want to change the ending. Why just meet one autistic person? If you only know one autistic person, you’re missing out – I know lots, and they are some of the coolest people I know.

So I rewrote the saying and turned it into a design for my Redbubble shop: “We’re Pretty Awesome.” This one is perfect for autistic people to sport on a t-shirt, phone case, or notebook. Clicking on the image below will take you to those products.

Weareawesome

Image has the text “If you’ve met one autistic person… You should meet some more, we’re pretty awesome.” Below that is a cartoon smiling face inside of a box.

Then I also made one for allies, the people who are not autistic themselves but know just how awesome we are: “They’re Pretty Awesome.” Once again click the picture to see the swag.

theyareawesome

Image has the text “If you’ve met one autistic person… You should meet some more, they’re pretty awesome.” Below that is a cartoon smiling face inside of a box.

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.

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.

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.

A Shifting Sensory World

Autism, Identity, Neurodiversity, Parenting

Everyone has senses. And most people have sensory issues of some kind, to some degree. Here is your mini primer on sensory processing: you already know about sight, hearing, taste, smell, and touch. But we have many more senses than those, including our senses of pain, temperature, vibration, balance (sometimes called vestibular sense), and proprioception – which includes the ability to sense your own movements, the position of your body parts, the sort of sense of being in your body that many people take for granted.

Introverts are more likely to be sensitive than extroverts in many ways – not just emotionally, but in the ways they perceive the world. Some people have sensory processing disorders (not an official diagnosis in the DSM but these would be sensory issues that are more intense than just being “sensitive”) who are not on the autism spectrum. Autistic people have sensory issues (though this is not the only thing that points to a person being autistic, it’s a significant one) that differ in degree from the neurotypical population, and sometimes in kind (that is to say, some senses may be heightened, some under responsive, and some are just different).

When I first went to see my psychologist to find out whether it would be worth evaluating me for autism, she asked me whether I could remember times during my childhood when I struggled with or withdrew from certain activities or environments due to sensory issues. I was startled by how difficult it was for me to answer this question.

I’ve always considered myself an introspective and fairly self aware person (after all I have a dozen hand written journals from my adolescent years) but this was not something I had ever been tuned into. What I knew was then I had always found myself tipping over into what I simply called “a bad mood” for reasons that I could not explain at all. The only way I could explain this to myself was that I must simply be “a moody person.” Maybe it was because Cancer is my astrological sign – I couldn’t think of any other explanation. I never liked this about myself but there seemed to be so little I could do to change it. It’s not that I was depressed or bipolar, I was just irritable, frequently, at unpredictable (to me) times. Over the years I’ve found myself apologizing and frustrated that I could not tell a loved one why I was being so unpleasant – there was nothing really wrong that I could think of – nor could I seem to snap out of it.

I was pretty self aware as a person, but I couldn’t be fully self aware as an autistic person, because not only did I not know I was autistic, I did not even know that something called “sensory processing” existed.

Then I had a child, and when my child was a toddler I would reach out for help with this parenting issue or that, and more than one person suggested that I look into whether he might have sensory processing disorder. The funny thing was, I read website and website and even a book or two, and there was the time we brought him for an OT evaluation, and I would comb through these lists of sensory processing issues and I just kept thinking, actually that sounds more like ME than him. Huh.

I’ve only veeeerrrry slowly, over many many months, begun to connect the dots between my apparent “moods,” and the actual sensory issues that triggered them. For half my life I was terribly disconnected from my sensory needs and aversions and was just kind of barreling through life ignoring them or giving them only cursory attention, much to my detriment.

This actually is an incredibly common phenomenon, even after an autistic person realizes they are autistic and have special sensory needs. Because autistic people usually also have executive functioning difficulties (I promised before I’d write specifically about executive functioning, and I will, sometime), it can take us longer than a neurotypical person to register sensory information or discomfort. It’s common to not realize that you are hungry, cold, in pain, etc. until you are on the verge of a meltdown and finally focus on what it is that has been bothering you beneath the surface.

Image shows a closeup of points of light in blurred bokeh effect, with the words “I’ve begun to connect the dots between my apparent ‘moods’ and the actual sensory issues that triggered them.”

 * Seams. One of the things that is always on those lists of sensory issues is “bothered by seams in clothing.” I would always see that and think, no, seams don’t hurt or scratch me. As long as they are always perfectly lined up and symmetrical on my body and not bunched up or — ohhhhh.

Light touch: wind blows. I’ve always hated the wind. The way it feels on my skin, the way it ripples my clothes, yeeeuchh. In high school I wore my hair long, and when the wind would whip my hair into my eyes and my mouth or even when it just blew over my head and messed up the part in my hair, I would find myself falling into a helpless rage. Over wind. This is one of the lesser known reasons why I now wear my hair short!

* Light touch: not OCD. Also sometimes when something, say, grazes my arm just slightly, I will feel a revolting sensation in that spot for a long time afterward, but I can sometimes fix it by grazing the other arm in the same place purposely. I still feel it but the symmetrical feeling makes it less irksome. This is the sort of thing that some people incorrectly dub “OCD.” It’s not OCD, it’s a sensory issue.

NoisyMy most intense, and most challenging, sensory issue is auditory processing. It’s still hard to explain exactly how it works for me, but I guess one way to describe it is that my auditory channel takes in a LOT of information and frequently floods me with way too much. It’s sort of a fluid and ever-changing sense that I seem to be able to control very little. (An autistic friend recently told me that she can kind of “shut off” her auditory input in noisy environments, which made me feel very envious!) Sometimes I am not aware that I am overloaded by sounds until I begin to melt down (for me this looks like getting angry and bitchy – one of my “bad moods”). Sometimes I am hyperaware of sounds and it’s like a scene in a movie where the protagonist is freaking out and the audio is all loud and chaotic. Sometimes I begin to involuntarily shut down auditory input and cannot focus on what people are saying to me – sort of like when you are driving while tired and keep zoning out so you don’t remember how you got to where you are, even though you are trying to pay attention – but with listening skills. I hate white noise, like ceiling fans. I hate repetitive noises that are not perfectly synched – so a sink dripping or a person snoring is horrid, while a ticking clock is probably okay. I love loud music but music that’s just barely audible drives me bananas.

* Am I in my body? One of the weirdest, but also to me one of the coolest, sensory issues I experience is off kilter proprioception. M. Kelter writes beautifully about his proprioceptive issues (and other things – I love his writing) and he also happens to love touching walls, like me – whenever I walk down the narrow hallway in my house I run the backs of my fingertips along the wall. But enough about walls.

Proprioception is somewhat hard to explain but it’s the sense of being in your body, one with your body, feeling all of your parts, feeling your own weight and mass. It’s probably quite difficult to imagine if you don’t ever have atypical proprioception.

I can remember at least as early as my teen years, and this still happens, that I would suddenly get this uncanny feeling of looking out of my own face. I would become too aware of my own nose, and then feel like I was looking down at my body doing things, but not feel totally one hundred percent integrated with that body, very much a kid’s cartoon in which a little person is sitting inside of a robot’s head operating a walking, talking robot. But who was this “me” who was looking out of this body, and why was I in this body? It’s an unsettling mindset that I don’t like to linger in for too long, but it’s also kind of oddly pleasurable and comforting too, possibly because I have always had these experiences and they are, though strange, familiar. It’s only recently that I have realized this is related to the proprioceptive sense and the way an autistic mind can become sort of disconnected (I think Kelter uses the word “floating” a lot) from the body.

Squinting. I am a little sensitive to light, always have to wear sunglasses outside, don’t like fluorescent lights. I really dislike contrasty lighting, so a dim space with bright spotlights makes me feel very yucky. Often when I am drawing I squint in order to screen out excess information and see just the overall composition of my work. But my sight is mostly a sense that gives me pleasure.

Bitter Betty. I like foods with strong flavors, especially bitter flavors. Probably why I love coffee with no sweetener, and the hoppier the better when it comes to beer. I also like spicy stuff and salty stuff. I like complex foods that have a lot of flavors going on. Lots of people with sensory issues have the opposite preferences for very bland foods. They are not just being picky but are quite overwhelmed by food flavors (or textures).

* Air “fresheners.” I think I have a pretty sensitive sense of smell, but mostly smells don’t bother me much. Even body odor, which most people find offensive, is a fairly neutral odor to me. The smells that bother me the most are industrial-chemical smells and artificial scents, like new carpeting, rubber tires, etc. The worst are those plug-in air fresheners – when I used to be an interior painter, I couldn’t work in a house that had one plugged in. When someone comes from a house that has a lot of air freshener, I can smell it on their clothes for hours. Those types of scents give me a headache and make me feel ill. I’d rather just smell your ordinary house smells!

That time of the month. All of my sensory issues are more intense when I have PMS. That’s quite common with autistic women. The thing I notice the most is my tactile senses – being touched, how my clothes feel – are the most bothersome during that time of the month. Very annoying when you are already feeling cranky and hormonal!

I’m still in the stage of identifying my own sensory issues, almost like uncovering repressed memories, except that they are not memories of things past, but repressed feelings that I presently feel. If you have sensory issues, whether they are part of something like sensory processing disorder or autism or just being a sensitive person, I think it’s okay to be up front with them. I admit that I didn’t always feel this way and used to think that people should just “get over it,” probably because I was so used to doing the same and wouldn’t allow myself to voice my preferences.

What are your preferences, what kinds of sensory inputs do you abhor and which do you love? Drop me a comment, I’d love to know!

Self Care During Depression or Burnout

Autism

How can you maintain good self care practices when you are going through depression and/or burnout? Someone asked me this question, and it’s a question that I am in the process of trying to answer for myself.

Often, the knowledge that we are burning out or becoming overwhelmed by depression prompts us to think more about self care (or perhaps a therapist or close friend will bring up the idea as they try to help you). The trouble is, self care is particularly challenging when you are in the midst of depression or burnout. Self care in those times seems overwhelming, exhausting, too much, maybe pointless, and the suggestion of it can be deeply irritating, as it may seem to imply that your depression is your fault or could easily be chased away by more time spent in the sun or eating vegetables.

So, let’s get this clear. Depression and burnout are not your fault, and you aren’t going through them because you’re not trying hard enough. I bet, on the contrary, you’ve been trying really hard – too hard, perhaps. Maybe not in ways that other people even notice. But definitely in ways that take a lot out of you.

Self care shouldn’t be one more thing that overwhelms you and makes you feel bad and like you aren’t doing enough.

Image is a stone staircase and the words “Self care shouldn’t be one more thing that overwhelms you and makes you feel bad and like you aren’t doing enough.”

But that still leaves us with, how do we do it?

I don’t have all the answers to this, so I welcome other people’s suggestions. Though I would caution readers that to give suggestions to a person who’s dealing with depression or burnout, it’s best if you can make them from a place of empathy and knowing how it feels to be in that place. Otherwise, we get advice like, “Just try a vegan clean foods diet, while doing partners yoga in the park, wearing a dress that makes you feel fabulous, thinking positive thoughts at a jar of rice.” Listen, if we were up to doing any ONE of those things, we wouldn’t be asking!

Here are a few ideas that I’ve collected or come up with:

1. Slow it down. I’m by no means a Type A person, but I think a lifetime of trying to fit into a world that I frequently find overwhelming has conditioned me to think that trying really hard all the time is the only legitimate way to be. So, although it can be immensely helpful for me to rest and do a LOT less, I am plagued with guilt and shame when I do. It IS okay to scale back your life when you need to, in fact it’s more than okay – it is sometimes absolutely crucial.

2. Try doing things in tiny increments. A friend of mine who is also autistic had the excellent suggestion that if you feel too overwhelmed or depressed to practice self care, it can be helpful and attainable to make very small steps. If you can’t create an exercise routine for yourself, try doing ONE squat. Now you have a “history” to build on gradually, a sense of having accomplished a thing that maybe you can do again tomorrow. Close your eyes for just ONE second and say the word “peace” to yourself. Step outside your house or apartment for just ONE moment and take one breath. Now instead of feeling like you can’t do it, know that you have taken one step.

3. Break it down into manageable parts. This is kind of a combination of the first two tips, but it’s useful for larger self care tasks like, for example, making an appointment to see your doctor. I do this all the time when a task overwhelms me. I’m in the process of doing it right now because I want to get a physical to make sure my fatigue is not a medical issue. First, I need to find a doctor. Then, I need to make sure that doctor is in my insurance network. Then, look up the doctor’s phone number. Then, look at a calendar and find some dates that would work for me so I am not caught off guard when they schedule my appointment. Then, call and make the appointment. I probably won’t do all of those things in one day, or even one week. That’s okay.

4. Ask for and accept help. I know that this is really hard for a lot of people. It’s hard for me. I feel shame sometimes about needing help for some things that other people manage handily. This shame does not always just come from within, unfortunately; other people sometimes judge us for those things, and that compounds the difficulty of asking for help. Someone close to me was recently scolded by an acquaintance for “depending too much on other people.” What is too much? – who gets to make that judgment call? In my view, most people depend too little on others, and burn out from trying to push past their own limits. Another challenging factor for me is that asking for help usually involves even more social interaction that I feel like I cannot handle, and it’s hard to predict whether the payoff of receiving help will outweigh the extra social energy expenditure. Usually, it does.

5. Find support from people who get it. The truth about support is that you can’t always get the kind you need from the people you love the most – often, you also need support from people who are also going through what you’re going through. Love and support from family and friends is invaluable, but talking (online or otherwise) with people who have similar struggles is so helpful. In many instances, just hearing someone else say, “I have had that exact same experience,” is enough to pull you out of a ditch, even if that person can’t give you specific advice on how to deal. There are Facebook groups for practically everything now, and they are a great resource.

If you can add anything to this list, please post a comment and share what works for you. You never know who may benefit from your experience!

Self Care is a Radical Act

Autism, Identity, Parenting

Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare. – Audre Lorde

I came across the above quote from activist and poet Audre Lorde and felt inspired to write on the theme of self care for the month of June. Interestingly, when I searched Pinterest for the quote, hoping to find it in some already-memed form that I could instantly share, I found a lot of people had chopped off the last phrase about political warfare. Why?

I suppose the truth is a little intense for some people, but I find it exciting. Self care is an act of political warfare, it’s radical, it’s revolutionary, especially when performed by people who are culturally oppressed by messages that tell them not to value themselves. Lorde, who died in 1992, was black, she was gay, and she was a woman. She knew that “If I didn’t define myself for myself, I would be crunched into other people’s fantasies for me and eaten alive.”

Only in the last year or so have I become keenly aware of the importance of this truth. I am writing on self care this month not as someone who’s got it figured out – far from it. I am writing as someone who feels the urgency of figuring it out, or at least finding my way there.

define

My first thought, my initial intuition, is that a key ingredient to self care is self-acceptance. Self-acceptance is not self-esteem. It seems to me that self-esteem is an ability to see oneself as good, smart, lovable, powerful, beautiful. Self-acceptance is at once easier and harder than all of that. Easier because it means it’s okay for you to be broken or falling-apart or lost or needy or still figuring it all out. Harder because, well, it’s hard to sit with all of that without judgment.

In “Acceptance as a Well Being Practice,” Cynthia Kim writes,

Unfortunately, no amount of practice or effort will allow me to make that leap in a single bound. Thinking of it that way, it’s easy to give up before I even get started.

What I’ve discovered over the past two years, however, is that I didn’t need to leap. Instead, I needed to build a bridge across the chasm, one plank at a time, and walk over it.

I have had to read that piece over and over again in the last several months. I never seem to stop needing to relearn this time and again: this is a process. I can’t rush it. I can’t just close my eyes, recite “I accept myself as I am,” and open my eyes a new woman. Instantly enlightened. This might take all day. It will probably take the rest of my life, if I’m doing it right.

The chasm I am currently trying to cross is to accept myself as autistic. Frankly, I thought this would be easy. I thought I was going to leap that one in a single bound, because I was so relieved to have the answers that autism provided to the confusing questions of my life, because I certainly accept other autistic people as worthy and valuable just as they are. But it’s not so straightforward. It’s in the details of life that I get tripped up.

Instead of accepting that some things are more energy-draining for me than other people, somewhere in the back of my mind I tell myself, I’m just being lazy. Instead of accepting that my social desires often outstrip my abilities, I tell myself, I’m just being antisocial. Instead of accepting that sensory breaks are real needs, I tell myself, I’m just being weak and pathetic. Instead of accepting that inadequate self-knowledge and attending support have probably held me back from the kind of success I’ve wanted in life, I tell myself, I just haven’t tried hard enough. Those are horrible things I would never say to anyone else, but I feel comfortable saying them to myself!

bridge

But I have to keep laying down the planks and building my bridge. When we don’t accept ourselves, we punish ourselves in all sorts of tiny ways. Self-deprivation is a big one. It’s an easy one, because often it requires zero effort. We simply don’t take care of ourselves, and that suffices to punish us for not being good enough in whatever ways we feel we are inadequate.

Everyone has their own chasms to cross when it comes to self-acceptance and self care. Neurological differences, disabilities, mental illness, chronic physical illness, body image issues, past or current abusive situations, financial poverty, marginalization because you are of a minority race or gender or sexual orientation, failed relationships, thwarted ambitions, career ambitions beyond motherhood or not having career ambitions beyond motherhood. Any of these, or fill in the blank with your own, can be reasons we beat ourselves up, but should not be.

This is precisely why self care is an act of political warfare. To do it you must reject the cultural messages that have told you that you are undeserving of care, for whatever reason. You take back the power to deem a person worthy or unworthy, and proclaim yourself worthy, just as you are.

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.