I Dreamed of a House

Autism, Identity, Neurodiversity, Writing

Dust particles catch the light, forming a glittering beam that looks solid, spearing the front door through its little square windows and ending in blocks of sun on the rug where we put our shoes. I turn to look outside and press my nose to the top middle pane of the window, touch my lips to the dark wooden sash. The wood always smells like rain and the rain always smells like this window. But it’s not raining now. It’s that time when the sun gets really yellow and loud, and you can’t watch TV because there’s too much glare even if you try to close the long green curtains.

I slide down into the couch and try to arrange myself so I’m sitting upside down, my legs up on the back of it, and my head hanging off the seat. When I’m sitting upside down I look at the ceiling and pretend it’s the floor. The living room ceiling has dark wooden beams across it, and I imagine hopping over them as I run across the room. After a while it starts to feel real, that I really live on the ceiling, and can walk from room to room on all the ceilings and see the whole house from there, looking down, or is it up, at all the furniture, and I start to wonder if I could ever invent suction boots that would let me walk up the walls and right over the ceilings for real. And then I am sad.

I once had a recurring dream about a house. It began in my teens and lasted through the next 20 years; every few months I’d have more or less this same dream: I am in a house, it’s my house but not like my house. I discover that there is space in this house that was always there but I never knew of it before. A secret wing, an attic, a basement – the space is vast, larger than seems possible for a room to be and still be part of my house. Finding this place is exciting and important, the key to everything. I wake feeling that a mystery has been revealed in my sleep, but forgotten as the dream fades.

Around the time I realized I was autistic, I stopped having that dream.

One question people ask when you identify as autistic in adulthood is, why find out now? What difference can it make at this point in your life? The answer is that it makes all the difference, for many reasons. For me it is hard to understand why anyone wouldn’t want to know themselves, but I know for some autistic adults this self discovery isn’t as important, and that’s fine for them.

But there’s also the reality that I can’t wear this old costume anymore. It’s coming apart at the seams and bits of the real me are sticking out here and there, anyway. Since my schoolgirl days people have always commented on my rigid posture, the way I pace when everyone is standing, the way I stand when everyone is sitting, the way when I finally sit down I sit at the edges of chairs, my hands tightly clasped or shoved under my thighs or balled into fists. “Hey, relax,” I’ve been told with a chuckle, too many times to count. “Sit down, you’re making me nervous.” I insist tersely, “I’m fine,” not even realizing. Every atom of my body holding tightly together to muscle my way through it all.

The easy part of it is surprisingly hard, and that’s finding out who I am now. What are my sensory processing differences? One would think that this would be obvious, but when you have lived a few decades not knowing that your perceptions of things are different from anyone else’s – assuming your reactions and responses to everything must simply be wrong – you end up having suppressed not only your reactions to stimuli but also your perceptions. Uncovering these is like unearthing a time capsule, from a time that never was – a time when I was truly myself, when I spoke, moved, felt, and thought with freedom.

Uncovering the natural movements of your own body is uncanny and startling. A lot of autistic people flap their hands when excited or agitated. I don’t flap. Until one day I read a disturbing news story, set down my phone and find myself flapping. And it feels familiar to do this. But where did this come from? It’s not as though I’ve gone looking for ways to act more autistic. By clearing away the dirt and detritus of a life lived trying to be someone else, by peeling away the layers of people that I tried to be, things emerge, unexpectedly.

I had a dream in my adolescence that I was a mummy. I walked down to the water near my house, trying to hide from passing cars in the night. I knelt at the water and tried to tear away the waxy bandages covering my body. But when I did, I found that my heart was exposed, red and beating in my chest. I was afraid. 

Image is a red brick wall with the text: First I must reassemble the foundational building blocks of my world. eisforerin

The hard part of this is disorienting and feels impossible at times: piecing it all together, trying to form a coherent life story for myself. Who I am now is just a moment. It seems important to reassemble the narrative, with this new information. The clues I have are few, because of the way the old stories I told myself distorted reality, and because of the way I’ve simply forgotten the rest, whether by will or by an inability to make sense of it – my brain refusing to allow long term storage to the incomprehensible – I cannot say. Sense memories are the memories that float up when I go dredging up the past, as if to reconstruct my very experience of the world. Feelings come to me – fear, anger, sadness, joy. I want anecdotes, but memory tells me – no. First you must reassemble the foundational building blocks of your world. This is what the sun felt like, this is how the water smelled, these are the sounds that filled the atmosphere.

I have my own bedroom at the back of the house, for a while anyway. The oak trees grow tall at this corner of the property and so it is always shady in the daytime and filled with the sounds of leaves rustling. In summer with the windows thrown open at night, fat junebugs hurl themselves at the screens while I try to fall asleep with a lamp left on, reading in bed. I have a pine wood desk with a tidy desk blotter that makes me feel like it is a real person’s desk where real work is done. I have stationery I use to write to my pen pals, eight pals at once at the peak of my correspondence – my online friends before there was an online. Later in that room I am a teenager and my parents have bought me a brand new oak wardrobe, a beautiful piece of furniture that makes me feel like a real person with a real place to keep my clothing. But one morning before school I have so much trouble trying to choose what to wear that day that I cry in a rage and slam all the doors open and closed and open until one of them cracks, badly, along one rail. I stop. I never tell anyone that I did this. I am ashamed.

Finding other people out there like you when you thought you were the only person like you is also strange, both unsettling and beautiful. When I was a child, I loved the story of the ugly duckling. The ugly duckling, of course, is not ugly at all, but is a cygnet born into the wrong world. Abused by the other animals in the barnyard for looking and behaving “wrong,” he flees the farm and seeks solace in other places, but is repeatedly repelled or put in danger from which he must again run away. He spends a season alone, and in his despair, he finally throws himself before a group of swans, expecting and even willing himself to be killed – but at the same moment, he glimpses for the first time his reflection in the water, and the swans accept him as one of them.

Since I realized I was autistic, I started to have a new recurring dream about a house.

I’m in a house, it’s not mine but it’s one that I have stayed in or am staying in and I’ve fallen in love with it. It’s unconventionally designed, rambling, even vast, with lots of surprising turns and hidden hallways. Each room is unique, quirky, with its own vibrant personality. Other people live here – some of them known to me, some not. They each have claimed their own space, but there are still rooms available. There are multiple kitchens and a huge backyard. Sometimes I am showing this house that I love to other people, showing off its charms. Sometimes I am exploring it alone. I think about moving in, but I hesitate. I love it, but can I live here?

And then I am walking through the house with my husband. We are planning out where the children could stay, how we could make this place safe for them. There is a realtor there, waiting for our decision. We tell him: we’ll take it.

And that’s the last time that I dreamed of a house.

Listening to The Real Experts

Autism, Books, Neurodiversity, Parenting

Image is the front cover of The Real Experts: Readings for Parents of Autistic Children, edited by Michelle Sutton. Front cover blurb reads: “Full of practical advice… a landmark book.” – Steve Silberman.

The Real Experts: Readings for Parents of Autistic Children, a collection of essays written by autistic authors and collected by editor Michelle Sutton, is a challenge for me to review. In my efforts to do so, I read through the entire book twice, once just to enjoy it, and then again to highlight my favorite passages. Even so, when I try to sit down and write a review, all I can seem to come up with a bubble of excitement in my chest and a wordless feeling that is kind of like a whole body fist pump, and then the equivalent of a third grader book review: “This book was AWESOME! You should totally read it!”

But why, Erin, tell us why. Yes, I still remember the format: a brief synopsis, then tell us what you think of it and why.

Michelle Sutton is a writer, neurodiversity rights activist, and mother in a neurodiverse family (for those new to the term, neurodiverse means that within her family are a variety of neurological types). She put this collection together by selecting a group of essays and articles, all written by autistic people, as a guide for parents – and other people who know, love, or work with autistic children – but mainly for the parents.

These are the people (or some of them, anyway) whose work and words have guided her in her own journey of parenting autistic children and now she wants to share them with others. I would not, however, want to limit this book only to people with autistic children in their lives, because in my view, it appeals to an even wider audience: anyone who is interested in learning more about what being autistic means, anyone who has a passion for equality for marginalized people, and anyone who cares about disability rights (and really, shouldn’t that be everyone?) will get a lot from The Real Experts. 

The authors in the book (including Sutton herself) are also all people from whom I have learned a lot – about parenting, about being autistic, about activism, about writing, and even about friendship, as some have personally been mentors and friends to me. I can imagine how difficult it was for Sutton to choose only one or two pieces each from the impressive bodies of work these authors have created.

What is covered by The Real Experts, in a purely topical sense, are a range of subjects of interest to everyone with a connection to the autistic community – communication, sensory processing differences, “passing” as neurotypical, ABA therapy, functioning labels, identity first language, disclosure of diagnosis, intersectionality, all kicked off by Nick Walker‘s well known article “What is Autism?” (Link goes to the book’s foreword, republished on his blog.)

Those are all important, useful, even crucial topics, but even those thought provoking questions and answers are only a part of what The Real Experts offers. The rest is the thing that gives me that bubble of excitement that I can’t quite put into words. There is power here. Beauty that almost hurts. Pain that almost heals. Vulnerability so real it leaves you a little breathless. There is love, expanding beyond what the page can contain.

Ultimately, The Real Experts is a book not only about parenting, or autism, or disability, but about humanity. This is a book in which autistic voices call out to the world with strength and clarity: we are here. We are people. We think, feel, love, hurt, and wonder. We thrive when you nurture us, but we will also triumph if you reject us. This is a book that challenges you: we will find our place in the world even if you try to stop us. And it’s a book that invites you: find that place with us.

*

The Real Experts can be ordered directly from Autonomous Press, an independent press cooperatively owned by disabled workers. 

In Fall We Begin Again

Autism, Identity, Neurodiversity

As the last overly warm days of early fall drift away, things begin to settle. To settle, they first shift, turn, transform, change. I tuck my crisp shorts away in a plastic tub and pull out stacks of thicker, softer things, fuzzy cardigans, lush woolen scarves. My hair seems to change density, into something wispy that floats in the dry air. After an almost-unbearably-hot shower I smear lotions on my legs and arms. At night in bed I fidget, kicking my legs out to try to un-wrap my pajama hems from around my ankles, scratching at one last annoying tiny itch on my nose before I can fall asleep.

Image is a faded photograph of fallen leaves in the grass, with the text, “What has changed in a year, but everything? – eisforerin.com”

This time last year I was finding something out about myself. To go three and a half decades without ever seeing your reflection anywhere and then suddenly to see it is an uncanny feeling – startling, exciting, scary. And not only to see yourself, but to be seen. “I’m not autistic, but…” I said. “Don’t be so sure,” she told me.

Through the holiday season, I had a secret. As I sat at the table eating Thanksgiving dinner with family. As I opened presents with my husband and children on Christmas Day. It felt thrilling but dangerous – a little like being in love. A strange comparison, but it was that urge to tell, a strong desire to share it with the people in my life, while feeling that it was unsafe to do so. That I had something to lose.

Fall isn’t showy like spring, but its changes are no less dramatic. Spring may be the time when everything blooms, when things are born, but fall is a chance to start over. Trees shed last spring’s leaves and rest, flower bulbs nestle beneath the earth, small animals burrow down into hibernation. The air crackles with static electricity and the promise of snow. We slowly shed the self we were this year as we think of who we will be next.

What has changed in one year, but everything? What I have lost is confusion and a feeling of floating. What I have gained is a place in the world.

This year I’ve shed my secret and I am settling. Things are shifting, turning, transforming, changing. Always changing.

*

I wrote this post for Autistics Speaking Day. Please see more at the Autistics Speaking Day Blog.

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.

The Clay vs The Seed

Education, Parenting

The Clay

A lump of clay has the potential to do or be almost anything, but until the intent, creativity, and pressure of a higher being is applied, it just sits there. Generally it quite willingly gives to that pressure and molds to the shapes desired, but if left to its own devices, it will just sit on the table, inert, with no ideas or motivation or momentum of its own. With the steady and goal-oriented guidance of more intelligent hands, it can be shaped into a thing of beauty and purpose.

The Seed

A seed also appears to be an inert object, but is actually a small bundle of energy and potential that just needs a fertile environment in which to grow. It needs some nurturing, but it does not need to be told how to grow, how quickly to do it, or what to grow into. Its full potential and eventual form are all contained within the seed. Funny thing, many seeds can even grow in a crack in the concrete; but it’s best to start with a nourishing soil, and sunlight and water as needed (another funny thing, too much watering can cause the budding plant to wilt). The seed needs opportunity, but not motivation; it is born with the drive become the mature form it will someday be.

I firmly believe that children are very much like seeds. I agree with author and father of unschooling John Holt when he says,

We can best help children learn, not by deciding what we think they should learn and thinking of ingenious ways to teach it to them, but by making the world, as far as we can, accessible to them, paying serious attention to what they do, answering their questions — if they have any — and helping them explore the things they are most interested in.

I’ve heard many arguments against unschooling that go something like, “without adults to tell children how to behave, it will be Lord of the Flies.” Lord of the Flies is an allegory about the essential evil of human nature (by the way, NOT children’s nature specifically! It’s meant to be about people generally, much the way Animal Farm is not actually about the natural instincts of barnyard critters) that ties in with the concept of original sin (and the name “Lord of the Flies” is a synonym for Beelzebub).

Golding believed that people were basically cruel and evil, and if the veneer of higher law and order were ever stripped away, we’d fall back on killing and eating each other. When people use the Lord of the Flies argument for controlling children, we should interpret that not as a parenting or teaching style but as a certain kind of fundamental worldview.

It seems to me that many people who are not necessarily religious or Christian nevertheless have absorbed this concept of original sin – man’s sinful, evil nature. And actually it seems a little dangerous to me that atheistic/agnostic people can retain that concept of man’s evil nature while rejecting the theology of redemption. Christians, at least, are saved by grace. What do you have to save you if you aren’t religious but believe that humans are inclined toward murder and destruction? (Maybe worth noting at this juncture that Golding died by suicide.) I suppose all you have is the idea that we can choose to be civilized and live under a higher authority that forces us all to behave and not be too murdery, and so it stands to reason that we have to do this to children (mold them, shape them, control them, and convince them it’s better not to stab people). (As Modest Mouse once sang, “who would want to be such a control freak?”)

I reject this worldview completely. I’m an atheist, but I’m a humanist with an essentially rational, not dogmatic, belief system. I believe that humans are social animals whose driving force is to form groups and support each other to perpetuate the species. My belief is almost the opposite of Golding’s, who felt that culture had the ability to sort of tenuously suppress evil; I think that culture often stirs up and perpetuates evil (see: racism, misogyny, ableism, classism, et al), while the essential nature of humans is sort of neutral-good. We are built to learn and thrive.

It’s my view that children do not need to be taught how to think; they are born knowing this. What usually happens is that adults convince them they don’t know how to think, and that we must teach them. Some kids acquiesce to this more easily, and struggle with a lack of self-confidence as they believe the message that they quite incapable of thinking on their own; others resist it, and struggle with a lack of self-worth as they are continually locked in battle with adults who tell them they are defiant and disrespectful.

These feelings don’t magically evaporate as we push grown children out of the nest; they persist into adulthood and so those children become adults who have fully internalized the belief that they were once children who, if they hadn’t been molded, sometimes forcibly, by adults, would not have amounted to anything – or worse, would default to delinquents and monsters. It stands to reason then that these are adults who, in turn, insist that children are lumps of clay who must be molded, taught how to think, shaped by outside hands into functional beings. As with many things in human culture, a cycle perpetuates itself.

I think that being autistic gives me a kind of advantage when it comes to critically thinking about cultural practices. I am as susceptible as the next parent (and homeschooler) to the emotions of fear and feelings of inadequacy, but I don’t adopt cultural attitudes automatically. It’s not in my nature to do what everyone else is doing (in some ways doing so would actually help me, but it just isn’t my way). In parenting and in homeschooling I’ve taken a leap out of the cycle of molding Clay. Providing a nurturing environments for Seeds makes more sense to me, better suits my worldview, and is more conducive to the kind of mutually respectful relationship with my children (and any other children for which I am in the position of caring and teaching) that I desire.

Image shows a sprig of maple seeds with the text: a seed needs some nurturing, but it does not need to be told how to grow, how quickly to do it, or what to grow into. – eisforerin.com.

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.

Uniquely Human: Book Review

Books, Neurodiversity

Image is the book cover for Uniquely Human by Barry M. Prizant, PhD.

Author Barry M. Prizant is a consultant and “autism expert” who works with the families of autistic children. His new book Uniquely Human is popular in the autism community right now because it proposes “a different way of seeing autism” (per the subtitle), which is that autistic people are not diseased or disordered, but, well, uniquely human.

I have so many mixed feelings about this book it’s hard to know how to approach it in a review or even in recommending it to people in casual conversation. Just looking at the book cover makes me feel a little sad because… is it really “different” to see autistic people as human? This book is striking a nerve with a lot of people, so obviously the answer is yes, this idea that autistic people are human beings who happen to experience the world differently from neurotypical people does sound like a revolutionary message to many readers. His message of compassion is revolutionary. His message that no one should try to extinguish “autistic behaviors” is revolutionary, to many people (not to most autistics, I can assure you).

As with Steve Silberman’s NeuroTribes, I would say that this is on the whole a good and useful book but there are some important critical points that I want to make about it, many of which are about language choices.

One comes up right in the Author’s Note at the beginning, which is about Prizant’s use of person first language (“person with autism”) versus identity first language (“autistic person”). Though he acknowledges that some (I would argue most) autistic people prefer identity first language, he chooses to use person first, without actually explaining why. I wish he had given some reason for this as I find it an odd choice coming from an expert who rejects the pathology model of autism (that is to say, rejects the notion that autism is a disease) and considers autistic people the real experts on autism. To me, “person with autism” always sounds like “person with a disease.” But oh well. Moving on.

Prizant rejects the idea that so-called “autistic behaviors” like flapping, rocking, echolalia (repeating words), spinning things, and so on are symptoms that should be extinguished, but instead are coping strategies to help an autistic person deal with an often overwhelming world. I totally agree with this and love that he says it, but I was little mystified that he also rejected the words “stim” and “stimming” for some of those actions. Those words were once part of the language of pathology but, like the word “autistic” itself, are now reclaimed words in the autistic community. I know lots of autistic people who enjoy talking about the joys of stimming. I felt that Prizant should know this if he really does put the experiences of autistic people first in his research.

Similarly, he rejects the word “obsessions” for the deep, specific interests that many autistic people experience. Again I appreciate that he is trying to move away from the language of pathology, but when replacing negative words I wish that he would use the words of autistic people. Instead, he replaces “obsessions” with a word coined by a parent of an autistic child: enthusiasms. Is it me or is that word a little patronizing? Can you imagine praising Nicolas Tesla for his “enthusiasms” in electricity and engineering? (Not saying many autistic people will be the next Tesla, but, y’know.) Most autistic people I know use words like interests, passions, special interests (another reclaimed phrase), or even – sure – obsessions.

There were other moments in this book when I felt that Prizant was sort of benevolently condescending toward autistic people – I won’t comb through and cite them all. It was just something that popped often enough to make this book problematic for me as a piece of advocacy.

And tying that into my larger qualms about both this book and NeuroTribes, as autistic advocate Judy Endow has written, these books by non-autistic authors and experts seem to be necessary to move the conversation on autism forward because the voices of autistic people are largely still not heard, respected, or trusted as sources of information on autism. That’s a problem and it bothers me. Still, I hold hands with allies knowing that we need them to help us make progress. (It reminds me of how Tim Wise talks in White Like Me about how some white people will only listen to truths about racial justice from other white people, like him, when really black people should be the authorities on their own civil rights, but… reality.)

Which brings me to the GOOD things about this book, in case you thought I wasn’t ever going to get there. Uniquely Human is, in essence, a humane way of seeing autism. Being autistic is a valid way of being and the autistic mind is part of human diversity. “Autistic behaviors” are never meaningless, and parents, teachers, and professionals’ jobs are not to eliminate them, but to understand the person behind them. I felt that Prizant was refreshingly bold in his indictment of autism professionals who do not work with the children in their care, but against them. And he was not Pollyannaish in his portrayals of what the lives of autistic people are like; I think in that regard he probably went a step further (in a good way) than Silberman in showing how autistic people face lifelong disabilities, and will need lifelong support in varying ways and degrees. Not all will become Silicon Valley tech geniuses, but all are valuable, because all are human.

As an operating manual for non-autistic people who care for autistic children, this is surely the best book on the market today. For anyone who is raising/teaching/caring for an autistic child, I would recommend you read this book and give it to everyone else in your life who regularly interacts with that child. But, as with NeuroTribes, after you read this I would highly recommend you move on to reading the words of actually autistic people too – you will learn so much. I am working on a new autistic references section of this blog, but in the meantime a few good places to start for parents and caregivers would be PACLA, Respectfully Connected, and We Are Like Your Child.

On Trust

Parenting

I want to write about trust. I have written about trust before, in the context of specific parenting practices, but what about the concept as a whole? What is trust? What does it mean in our lives? Why does it matter?

Trust, like love, is a relationship rather than a feeling. One-directional “love” is really just infatuation, and one-directional “trust” is really just blind faith. To truly have a trusting relationship with another person involves being a trustworthy person for them, and respecting their privacy, autonomy, and feelings. This dynamic has to flow both ways in order for the whole thing to really work, to be authentic and sustainable.

Early-ish on in our relationship, while we were not yet married but were financially intertwined enough to share many major expenses and responsibilities, Mike and I argued about money fairly often. I don’t feel that’s too personal to reveal, as many couples have that issue, right? The gist of our dilemma was that I constantly worried too much and he wanted me to stop hounding him about every dollar. The dynamics that were in play involved my fear of scarcity fueling my need to control his spending, and his fear of being controlled by me fueling his need to assert autonomy by spending money on whatever he chose.

The only way out of that seemingly endless cycle was to shift our mindsets from fear to the opposite of fear: trust. I don’t recall how we eventually broke through that wall of fear (I think, truth be told, some friends of mine basically said dude get off his back you are acting irrationally), but what we ended up realizing was that we had a common goal: we wanted to build a stable financial future together. When we let go of our fears we were able, pretty easily in fact, to trust each other to work toward our common goal without having to bicker over every single dollar.

Building a trusting relationship with another adult may, as tricky as it is sometimes, seem straightforward compared to the task of building a trusting relationship with your child – but the latter is no less important. You and your child, too, have common goals: for your child to grow up safely, for him to have a full life, and for him to have healthy relationships (hopefully including one with you). trust

Image is a map with a compass in the lower right corner, and the typed words: I may stumble, fall, veer off course many times, but I always know to orient myself toward the true north of trust.

There are a lot of factors going into this parent-child relationship that are different than adult relationships – factors like the long slow burn of child development, like our need to protect them and keep them safe, like our worries about delivering them to adulthood prepared to live without us, and like the incredibly enormous loads of baggage we carry from our own childhoods and from the social conditioning all around us.

However, I passionately believe that none of those factors exempts us from the need to build trusting relationships with our children, including all of the building blocks we use in adult relationships: being trustworthy, and respecting the other’s privacy, autonomy, and feelings.

Being trustworthy for your child is more than keeping a promise to go for ice cream. It means being honest about your own feelings (you don’t have to tell them all the gory details, but don’t put on a stoic mask when you need a good cry; they know). It means being humble when you are not at your best – apologizing when you screw up. It means that you are their safe place when they screw up or fall down or need a good cry.

Respecting your child’s privacy and autonomy may look different in everyone’s house, but I hope that the concepts, at least, mean something to you.

It makes me sad to hear parents say that they don’t trust their children to make good decisions, to want to learn anything, to use their time constructively, to solve their own problems. My heart aches when I hear someone say that if they don’t make their kid do this or that, they would never do anything (except play video games, is often how that sentence ends). If you think that your lack of belief in your child does not filter into his consciousness, you are kidding yourself.

Being in a trustful relationship with our kids means holding several pairs of slightly dissonant ideas in our heads at the same time: we know that young children are too young to understand some things, yet we must trust them to be capable and curious beings. We surely must endeavor to protect their safety, yet we know we must allow them to experience risk, pain, and failure in order to grow. We know we are tasked with providing them with moral and social guidance, yet we also know that we must allow them to navigate the world and the humans in it on their own terms.

None of that is simple or especially easy, at least not all the time, but for me, it’s about setting my compass in the right direction. To be frank, I haven’t felt like the World’s Greatest Mom lately – I’ve been tired, a bit down in the dumps – but I’m still trying. I may stumble, fall, and veer off course many times, but always I know to orient myself toward the true north of trust. Remember (I say this to myself as much as to you, dear Reader) that the opposite of trust is fear; so when you find that fear is dictating your relationship with your child – or anyone else – you can be certain that you are heading the wrong way.

Plumbing My Memories In An Attempt To Break Through Writer’s Block

Parenting

One morning when I was 15, J and L and I walked from L’s house down to the lagoon at the end of Skiff Ave., carrying a canoe on our heads, just before dawn. Only L knew how to canoe; she paddled. We saw the sun come up and it felt like we were the only people in the world. I don’t think we talked much, or at all. That’s how I remember it, but my memory is unreliable.

Another time we walked from L’s house to a hotel at night, climbed over the fence, and jumped into the pool with all of our clothes on. We walked back to her house dripping wet. Some boys passed us and asked why we were soaked. We told them and felt cool.

It was maybe that same summer that L and I slept on the beach on the far end of Owen Park Beach – it may have even been private property. I suppose you probably couldn’t get away with that sort of thing now, but in 1994 we did. When I say we slept on the beach, we literally slept on the sand with no tent or even sleeping bags. In the morning, with sand in our hair, we bought breakfast at Cumberland Farms store, instant cappuccinos and Hot Pockets microwaved right there in the convenience store.

I couldn’t have explained why I lied to my parents in order to do things like this, but it felt important. To slip away from ordinary life and exist in the margins, to be nobody nowhere, even for 24 hours. Even for 12 hours. Even for 2 hours.

There was a time a year or so later when a group of friends and I camped out in the State Forest. It wasn’t a legal camping spot but no one would catch us there. It was just a clearing out in the woods somewhere. It was early November, too late in the year to be camping, especially as we were with just sleeping bags and some basic survival skills. We built a campfire. I took pride in being good at building a nice campfire because I had figured out how to do it by my own internal logic. We passed around a flask of something. We let the fire die down slowly as we huddled around it in sleeping bags. In the early morning, one of my friends woke up and screamed that her contact lenses were frozen to her eyes. We all laughed. Waking up outdoors with your whole body warm in a sleeping bag except for the top of your head and your face feeling chilly in the November morning isn’t like anything else.

There was another time we were camping in another forest and S called to me to sleep in his tent. We slept side by side in sleeping bags. When we woke up in the morning our faces were inches apart. I could see tiny grains of sand in his eyelashes. He said something to me about a bird and I replied. I didn’t understand him, at all. Later he wrote a poem about it and read it at an Open Mike in front of our friends and everyone. He’d made a literary reference to a girl and she didn’t get it. He didn’t mention me by name but I slipped out of the coffee shop and stood outside in the night keeping my tears in. Someone out there smoking a cigarette said my haircut made me look like a homeless kid.

Static Mode

Parenting

I do believe that being a creator means being a conduit between yourself and that other mysterious place from whence ideas come. In my experience, you can’t so much reach inside yourself to pull forth – by force of will – your stories and images, as you must instead make yourself available to the stories and images that already exist inside you.

It all sounds a bit woo-woo and I’m not actually big on magical thinking, but, hey – that’s the way it seems to work.

Unfortunately for me, my conduit to the Place of Ideas has been all static lately. I’m not even having any good Shower Thoughts. I just stand there thinking about how much I need to scrub the mildew out of the tile grout. That’s not inspiration.

However, I feel like I have to write something, even if it’s the worst thing, just to keep myself open, just a crack, to something new. It doesn’t make for scintillating reading, I know.

There’s this thing that happens to autistic people, when sometimes a special interest dries up – or worse, all of them do. Sometimes they come back, other times they don’t and you find another one. But when that fire is out, there’s nothing you can consciously do to kindle it back up or start a new fire. Much like with creative inspiration, you kind of just have to wait for an interest to find you.

I think I’m in that icky state when I have no special interest for a time. I feel simultaneously dull, bored, and restless. Nothing excites me very much, but it’s also hard to just relax. I crave that feeling of deep focus, but I haven’t sunk into it in some time.  I try to read a book but it doesn’t grab me. I try to write but nothing’s there. I can’t even think of what to eat half the time.

I hope it passes soon.