Follow Up: Radiolab's Underwhelming "Juicervose" Autism Coverage

Mali, shortly after getting into a verbal
sparring match with Demetri Martin
At a 2011 Radiolab show in Berkeley.
[Image description: girl with beige skin and
brown fuzzy hair pulled back, wearing
wire-framed glasses, smiling,
wearing a multicolored long sweater,
in front of a blue screen with white
words inside a black box reading:
with Thao Nguyen
and Demetri Martin

One week later, I am still so sad that Radiolab bungled their Juicervose autism episode. I've been wanting and waiting for them to do a truly autism-focused episode for just about ever. I even wrote about what I'd like to see in a Radiolab autism episode, in 2011. But, aside from the stories from Owen Suskind and his family, most of the reporting was the same superficial, negativity-based autism coverage the media almost always provides. Almost always. I expect better from Radiolab, and I said so, at Thinking Person's Guide to Autism:
You need to know that such tiresomely biased storytelling robs autistic people like Issy Stapleton not only of their victim status but of of their humanity. It turns autistic people — already the target of sloppy media prejudice — into villains. It perpetuates the dangerous and dangerously contagious notion that it is “understandable” for parents to murder their autistic children, if those children cause too much caregiver stress. You told your fiercely loyal and trusting audience, directly, that 'unsuccessful' autistic peoples’ lives are of lesser value.
People pushed back. The Radiolab staff pushed back, seemingly in surprise. When Emily Willingham tweeted about the TPGA critique, Jad Abumrad asked her, "Did you actually listen to the piece?" which was ... an equally surprising response. Though after a few more exchanges with Emily and various TPGA folk, Mr. Abumrad did say that he heard us and was listening, sincerely.

Other responses included assertions that the Juicervose episode could have been worse. I'm pulling Emily's response to that comment out, as it's a dead-on critique of the episode's overall flaws:
"It could have been a whole lot worse" is a pretty low bar to set for a show that bills itself as being "about curiosity" and presents itself as a place "Where sound illuminates ideas, and the boundaries blur between science, philosophy, and human experience." The richness of the autistic experience, for better and for worse, is not encompassed in Temple Grandin, is not conveyed by trite repetition of the same harmful memes of "lost, locked away children" whose aggression brings nothing but pain and hopelessness, and is not well served by turning to the usual suspects (eg, Simon Baron Cohen) as sources. That's a surface treatment sourced from the world's most cursory google search, coming from a quarter whose audience typically expects a little more than that. A lot more than that. And who should have given better to that audience. This isn't Donald Trump mouthing off on Twitter. It's NSF-funded Radiolab, hosted by a MacArthur fellow, for God's sake. 
Imagine this were a show about the experience of being a woman, communicating as a woman, making yourself understood as a woman. Imagine that they open by describing women as "passive" and "emotional." They present a couple of women who seem to transcend this 'problem' of being a woman but suggest that for the rest of women, the outlook is not so rosy. They talk with a researcher who's got a pet idea about what makes a woman a woman. They give us Betty Crocker and a 1950s gynecologist when they could have given us your mother, grandmother, sister, aunt, wife -- a rich tapestry of the experience of womanhood that defies stereotypes, not in unique or unusual ways but in ways that surprise the audience with their generality, that open the minds of the audience to new ways of thinking about women and about how women themselves think. But no. We get tired memes about women, a tired narrative about sporadic transcendence of getting past all that woman-ness, and they serve up a faux-gritty reality of what it allegedly *really* means to be a woman for most women and that reality is all negative and harsh and, sniff, someone hand me a tissue 
That's not journalism. That's not being honest with your subject. That's not being "real" or tackling grey areas. That's being shallow and lazy and letting your own blinders about your subject block your view--and thus block critical perspectives that could have enriched your narrative--and your audience. 
Responding to allegations that we only want reporting on "happy" autism stories, which, erm, no, we are pragmatists and supporters of autistic people's inviolable humanity, Autistic writer Chavisory also commented:
There's a difference between "reporting on darker sides of a story," and "reporting" a story in such a way as to reinforce thinking about a subject that devalues the lives of the people being reported on, and makes the story of autism really the story of how the people around us are disappointed in our existence. 
And frankly, that's an old, boring story. 
It is past time that the story of autism was not defined by how worthless we [autistic people] are to other people.  
Keep listening, Radiolab. Curiosity is only how you find your stories. Listening is what makes your stories different, and makes them matter.

And as a side note: you might want to let colleagues like Andrew at NY Public Radio know that it's a bit disingenuous to leave comments such as "Please take this post down as you are hurting the cause of good journalism by demanding only activist-oriented reporting" without mentioning that they are commenting from a NY Public Radio IP address.


Amplify This: "Don't Murder Your Autistic Kids"

When we hear that a mother has tried to murder her own child, most people howl in agreement that the mother deserves to be prosecuted to the fullest extent of the law. Most would be angry if that mother successfully plea bargained her attempted murder charge down to child abuse. Most people would not "understand" mothers abusing or murdering their kids.

Autistic, Not Less Valuable
[image description: Leo in foreground,
Golden Gate Bridge & camera-wielding
tourists in background]
Most people would feel that way, unless they learn that the child in question is autistic or otherwise disabled. And then, horrifyingly, people excuse the parent's murder attempt, and start blaming the victim: the child.

This is happening again -- right now -- because of Kelli Stapleton's recent plea bargain for poisoning her autistic teen daughter Issy. News articles and blog posts are using images of Kelli hugging the daughter she tried to kill. Stories are insisting on sympathizing with Kelli, talking about how hard Kelli's life must have been, ignoring her ex-husband's Matt's testimony that Kelly bought an electric shocking collar meant for dogs to use on Issy, "'spiced up data' making physical incidents with Issy look worse than they were, and 'stated that children with autism have to be taken care of, such as taking the child to the train tracks or off a cliff and suggesting a parent should kill his or her child.'" And few accounts portray Issy as a victim -- or even as human -- at all.

I'm begging you to help change those conversations. As I wrote at BlogHer, I want us to be more careful and compassionate when we discuss cases like Issy's. I want people to think about how they got into a headspace where they think it's not just acceptable but defensible to empathize with a self-admitted child poisoner:
"If you identify with a murderer rather than a murder victim or if you become upset when people criticize parents who hurt or kill their disabled kids, then maybe it's time to think about how you found yourself in that dangerous mind space and start making changes to help you, your child, and your family."
And I want us to put victims like Issy first. I want parents to understand that while of course they need and deserve help if their children require intense support, they need to get that help from people who believe in and respect their kids, not from people who do see their children's lives as less worthy than non-disabled children's lives.

Above all, and right now, reporters and writers need to stop sympathizing with murderers like Kelli Stapleton. Parents need to stop saying that they understand why Kelli chose to poison her daughter, because unless they've actually attempted to murder their own child, then, no, they don't.  They also need to stop declaring that a "lack of services" explains these murders, because that's not a universal factor in these crimes. And most parents who lack services do not murder their kids (nor do most parents who struggle with mental illness, which is usually the next justification for unjustifiable acts by parents against their disabed children). As parent Matt Carey writes:
We need better supports. But we can not condone the murder of one of our own [...]. If we as parents can do this, out of some ‘mercy’ argument we are a very small step away from state sponsored murder.
And the media, especially mass-market media like People Magazine (on sale now, but I'm not about to link) and Dr. Phil (interview with Kelli set to run in two days), need to stop sensationalizing stories like Kelli's at the expense of -- and without bothering to consider the personhood of -- autistic people like Issy and my son Leo, and FFS need to stop writing headlines like "County Jail Better Than the Prison of Autism."

If you want to take action, please share my BlogHer article on changing the conversation about murders of children with disabilities. That piece is more compassion- and solutions- oriented than my sorrowful raging among friends, here on my online porch. Link here:
You can also RT my tweet to People Magazine and Dr. Phil:
 Why @peoplemag's & @DrPhil's sympathetic coverage of Kelli Stapleton is so dangerous: http://www.blogher.com/changing-conversations-when-parents-murder-disabled-children … #JusticeForIssy #autism
Direct link to the Tweet here:
And if you find yourself in a community that empathizes with or defends Kelli Stapleton, you need to get the fuck out of there, and do it yesterday. You need to find people who will support you through hell and high water, but you endanger yourself and your child if you are emotionally dependent on people who refuse to distinguish between the pre-crime mindset of "I don't know how I'm going to get through this, help me not be a danger to my child" and the post-crime mindset of "I understand why Kelli tried to kill Issy."


Updated to add: Many people in the autistic and parents of autistic kids communities have asked people to focus even further on Issy as the victim and crux of this story, by not mentioning Kelli entirely in their writings and social media shares. I'd already written these two pieces, but you can be damn sure I'll be following suit from now on, using the hashtag #JusticeForIssy. As Matt Carey writes today at Left Brain/Right Brain:
One can just bet that many comments will take the form, “no one should kill her child…..but…..”
There is no “but” in this. No one should commit murder. No parent should kill her child. Full stop. Period. “But” does not apply
Variants of this are “don’t judge her” and “until you walk in her shoes.”
“Judge” means to form an opinion
For those who write that: the mother tried to kill her daughter. I will form an opinion about this–this is wrong. I don’t have to “walk in her shoes” to say that. Why won’t you form an opinion? Why does her daughter’s disability have anything to do with forming this opinion?
Just in case you are wondering: I did purposely write this without mentioning the mother’s name. The mother is not the story. When autistics have been murdered in the past there have been news stories that never mention the name of the victim.
I recommend sharing Matt's post as well: http://leftbrainrightbrain.co.uk/2014/09/13/when-a-child-is-killed-by-a-parent-the-word-but-does-not-apply/

And I have to once again thank the autistic author of the blog Real Social Skills for helping me write the more thoughtful BlogHer essay, in asking people to think about their attitudes rather than just telling them their attitudes are wrong. 


So What if God Is Change; Change Is Hard.

Anything different is bad. That is Leo's mantra. It's also mine. And we have had a lot of change lately. None of it is truly awful, but some of it sucks, and some of it is just different, and all of it means adjusting. Those of us who are happiest wallowing in our ruts simply prefer not to emerge unless we have to, like contented little piggies in nice squishy mud.

Lots of "have to" just now. Which means I've got a lot of "Oh, bother," after my role model Winnie the Pooh. Much of that "have to" is not really bloggable, but here's what is (what I can recall right now, anyhow).

Mali has started 5th grade. It's her last year as an elementary student. It's our last year ever having an elementary student. WHAAT? This baby? Noooo.

[Image description: selfie of beige-skinned baby wearing
lavender jammies resting her fist against her face,
sitting on lap of beige-skinned woman with
dark hair and a black long-sleeved tee,
also resting her fist against her face.]
 She also looked on in despair as four of her best nerdling friends (nerdling being currently defined as: Minecrafting, My Little Pony-loving, Adventure Time-watching, science-embracing) moved away over the summer. She is learning to live with missing her friends, but as she's a contemplative sort beneath the Pinky Pie enthusiasm and bravado, the heartache is always there. For now. And she always has plenty of friends. For now. I worry about nerd-shunning this year, though as she mostly hangs out with boys, and with girls who are children of engineers, she should be OK until she gets to the local middle school next year and finds herself among an even wider selection of nerds.

Three of my Personal Pillar friends also changed access this summer. Two went to-time office jobs, one to (eep) Southern California. So that is different, especially for the two who were right-here local and with whom I had weekly routines. They're all on social media, of course. And email. And all the circumstances that led to their changes are really great, and I am happy for them. Just a bit lonelier because I tend to glom onto people like a strangler fig. Which, come to think of it. Hmm. Anyhow.

Iz is in 11th grade. I can't even -- 15 and full of pepper and whip-smart is a whole lot of a whole lot, parenting-wise. It's all Fascinating but requires my investment in a new parenting toolkit so that together we don't both blow the roof off the house. I gather this is a not-uncommon scenario for parents and teens who cohabitate, and may explain boarding school culture. It's worth getting through the hiccups because she is such good company when we're not locking antlers. And then there's her new schedule -- which she lobbied for -- that gets her to school by 7:30 every morning. Which is movtating, so far. She's also activisting, due to irritation with her school's dress code and its promotion of "sexism and rape culture." Do sign her petition if you can.

Leo is happy to be back in school, in his new class with the younger teenagers. He had a summer that was both awesome (he did 10 days at camp and met Steve Young!) and hard (he didn't sleep that much, which made him restless during the day). But his health continues to improve, and we have become an all-whole-grain household to support him in those efforts. He had to give up his beloved, very processed veggie booty, but, like Mali, he's managing. The biggest concession (which he doesn't mind but I do) has been switching to Dannon Lite N Fit yogurt so he can get enough calcium and protein, without the sugar bombs of his preferred Wallaby. But the Dannon has artificial sweeteners, which I do not let my family (our stash of Diet Cokes is for guests, not for us). But his nutritionist said the trade-off was worth it. So there we go. He's got some of that teen O RLY going on too, like Iz.

[Image description: close up of
red rose petals on a
dark wood surface,
surrounded by candles in jars.]
Seymour and I celebrated some milestones last month. We've been in Deadwood City for 20 years. We also celebrated our 19th (!) wedding anniversary (smooch that handsome man) while we were in Oaxaca. That trip deserves another post. One highlight was arriving for our anniversary dinner at Casa Oaxaca and finding the table covered with candles and rose petals. I have seen such things in movies but never experienced it myself. It was enchanting. Seymour and I would like to go back to Oaxaca Now please. With kids or without. Even though visiting Oaxaca meant I can't donate blood for another year because the CDC says it's a malarial zone. Right. Like you can trust what they say these days. (Kidding! Referring to delusional anti-vaxxers being even more delusional than usual. Which makes me furious as they're once again endangering lives and hurting not just Leo but their own kids in the name of Fearing Autism.)

You can probably tell by the droning and the run-on sentences that I am tired. IT'S ALL TRUE. [edited to add: because those last three weeks of August were just me and my offspring, a few ER visits, a bit of projectile vomiting, some ear infections, 5,000 doctor visits because we're not supposed to schedule Leo's many many specialty visits during school time, and lots of swimming and hiking.]  But the kids are back in school now, so, let's see what happens.


Blogust: When Your Comments Save Lives

August = Blogust. And Blogust is the wonderful time of year when the UN Foundation's Shot@Life taps members of the social media milieu and Blogosphere, to use our synergistic connectivity to save lives: "Every time you comment on or share the Blogust posts, Walgreens will help provide a life-saving vaccine for children around the world who need them most."

That means that every comment -- on this post, or on one of the Blogust14 posts that will be rolling out during this month of August -- is literally a chance to save a life, to get a vaccine to a child who otherwise would not get have that chance. It couldn't be easier, so please comment comment comment and spread the word.

Here's more of what Blogust is all about:

Image description: tiny beige-skinned girl,
age 3, holding an inflated purple latex
glove in front of her face.
Why do I care so much about getting vaccines to kids in countries where vaccine access is limited? Besides being a mom, besides having a heart, besides being grateful to be be part of a movement that makes taking action -- real action -- so damn easy?

Because I'm lucky. Because my third child, Mali, didn't get her first vaccinations until she was three because her brother, Leo, is autistic, and in 2003 no one could tell me why, and I fell for the vaccine-autism causation hoaxes of the era.

I know better now -- there is no link between vaccines and autism, and autism is nothing to fear -- and thankfully nothing happened to Mali -- she didn't die from pertussis as a baby, and she didn't die from measles encephalitis as a toddler. But she could have. And other kids, shamefully, still do. And you can help prevent more of those deaths simply by commenting on Blogust14 posts and social media.

So please, please participate. Every child belongs to all of us. Every child is valuable. Every child matters. Every child could be your child. Every child deserves, well, a Shot@Life.

More information:


Autism, Staycations, Patience, and Decompression

Image description: a beige-skinned
boy with brown hair, seen from behind,
at a distance, swimming in a pool
surrounded by a beige railing & deck
with trees and blue sky behind and above
Leo and I have had a lot of together time this week. It's a bit of a staycation. The rest of our immediate family is in Canada, ziplining over 500 ft chasms and watching firework festivals. My Dude and I stayed here because it's the last week of his summer school, and One Does Not Simply Miss ESY. Though we feel the absence of the rest of our crew, I'm exhausted and grateful for the break. I think Leo also appreciates this relative languidity.

We've spent most of our time chilling and appreciating the ease of being a duo. When Leo had a short sharp case of the barfs two days ago, we didn't have to worry about interrupting his sisters' or dad's schedule -- he stayed home from summer school, took up residence on the couch, and we watched his favorite videos as well as some Key & Peele. He asked to go swimming once he felt better, and once I was sure his liquid projectile phase was over, we honored his request to go out for lassis, naan, & saag paneer. He was pleased.

The two of us aren't just fans of downtime and decompressing -- we both need it, Leo more so. As autistic autism parent S.R. Salas writes,
"At some point each of us needs a break from something. For many Autistic people the need for breaks is more frequent and tends to last longer. What would be considered an uneventful day to non-Autistic people: going to school, going to work or whatever the daily routine is, can be extremely exhausting for us."

Non-distracted together time also makes it easier to let Leo do things at his own pace, without hurrying him. To wait and see what he will do, rather than rushing him or even prompting him (our boy does love and ask to be prompted; he is a social dude after all, and feeding us scripts for what he wants us to tell him is a stress-free, unpredictability-free way to converse with his people). I am grateful for this gift of pressure-free patience. It's important, as M.O. Kelter of Invisible Strings relates:
Too often with autism, the focus is placed on one question: ‘How do we make progress?’ And when the time is right, that can be okay…but it can also put an overwhelming amount of pressure on the autistic. Sometimes, the better question is, ‘What does this kid need?’ Sometimes, you gotta set the framework aside for a bit, protect that little heart. That’s always what you go back to.

Leo needs patience to make progress. Repetition, space, and patience. He needs our faith that he's paying attention. And our faith in the utility of repeated scripts, prompting, and demonstrations until he doesn't need them any more -- and, increasingly, he's suddenly doing the damn actions on his own. The other night I wasn't fast enough with his requested prompt to hand him the shampoo so he could wash his hair, so he just complete his entire shower routine -- including rinsing and toweling -- independently. He'd practiced enough. He knew what to do, he just hadn't let himself string it all together before then. It was time. He was amazing.

So, if you're a parent of an autistic child who loves being prompted or uses scripts, do your best to invest in patience. You never know when the skills being taught or modeled are going to root. Even if they never do, if the repetition and the prompting are soothing ends in themselves, the two of you have had that time together, and you're making your kid happy. If your kid is like Leo, that is. 

As long as I'm in an advice-giving mood, here's what I told Washington Post staff writer Mari-Jane Williams yesterday, when she asked for "advice for parents of children just diagnosed with autism, from those who’ve been there." I hope that positivity-oriented autism articles like this only become more common:
I wish — more than anything — I’d tried harder to understand my son instead of trying to ‘fix’ him. He was the same sweet, capable boy both before and after his autism diagnosis; the only change was my awareness of his needs. And he needs me to love him, respect him and champion him. He needs me to make sure he has time to play. He needs me to fight for appropriate communication and learning resources. He needs me to get him supports to navigate an autism-unfriendly world. Understanding instead of fighting Leo’s autism makes us both much happier people.
I'm still very tired from being rather inept when it comes to managing/living a busy life that sometimes includes intense conferencing, so I hope these thoughts makes sense. Love and listen to and have patience with your autistic kids and give them the space they need, essentially.

Additional input welcome.

I Like Smart Smut And I Cannot Lie

I do love intelligent smut. A smart smutty novel is one of my favorite ways to decompress (and mental decompressing is key right now, after the wonderful whirlwind that was BlogHer14).

Unfortunately, good smut can be hard to find. The trashy novels in my grandmother's basement blew my naive teenage mind, but in hindsight were indistinguishable Olden Tymes ravishment fantasies (a.k.a. rose-tinted rape), combined with breathless and statistically improbable odes to schlongs of unusual size.

Ew to that. Adult me wants well-written smut, ideally of a fantasy, sci-fi, or historical bent; with fascinating plots, populated by fascinating characters getting into fascinating situations -- and also having fascinating sex. And it needs to be sexy sex. Octavia Butler is a genius and probably my favorite storyteller, but her worlds are bleak, and that includes the sex.

So who does intelligent sexy sex, and does it right? 

At the moment, my favorite smart smut writer is Lia Silver, author of the Werewolf Marines ebook series. Its setting is contemporary, but, hey, werewolves. The writing is as compelling and streamlined as Ms. Butler's -- the first book, Laura's Wolf, even evokes Clay's Ark -- but Silver's sexy sex is sexy indeed. Even when it's condom-y sexy sex. I know! But yes. Laura's Wolf gets bonus points for its straight take on sensory issues and PTSD (the author is a therapist specializing in PTSD). Here's a summary from the Amazon page:
"Roy never wanted to be anything but a Marine. But on his last tour of duty, he was bitten by a werewolf. Next thing he knew, he was locked up in a secret underground laboratory. Despite the agony caused by his newly enhanced senses, he managed to escape his captors. Unable to return to the Marines, his entire life shattered, he hid out in the woods of Yosemite."

Though I am leery of overwrought alternative historical fantasy worlds, Jacqueline Carey's Kushiel series is skillfully constructed and too much fun. If you appreciate quality smut as much as I do, and you also happen to be a geographile and Sherlock Holmes fan, you'll find volumes of rewarding distraction in the adventures of a beautiful, brilliant submissive living by her well-trained wits in a reimagined medieval France -- in which sex is essentially a sacrament. Ms. Carey is also a skilled namer. You wouldn't think that matters in the context of this review, but it does -- this is a new world with new characters and new place names and new gods, and few things jar me out of an author's world faster than unskilled character and place naming.

I reviewed Jennifer Ashley's The Madness of Lord Ian MacKenzie two years ago, and gave it kudos for featuring "An autistic character portrayed as not just brilliant but totally hot -- and in need of acceptance, not conformity (the word 'autistic' is not used as the Victorian time frame predates the label)." I'd never before seen the perennial "he just needs the right woman" theme incorporate autism acceptance -- woot to that. And who doesn't love a 19th century UK-Paris-set tale? Recommended.

And now, lucky us, Ms. Silver released a second Werewolf Marines book, Prisoner. Amazon summary:
"Echo was born when a secret laboratory tried to genetically engineer the perfect assassin. Two clones survived: Echo, the success, and Charlie, the failure. Stronger and faster than any normal human, Echo knows no life but killing, and has never loved or been loved by anyone but her frail sister. But that's about to change..."

I've not read Prisoner yet -- I've squirreled it away, to binge on during this upcoming weekend's flight to (speaking of travel and fantasy) Oaxaca. Where I am going with just my husband, to celebrate a rare alignment of our kids' sleepaway camps significant wedding anniversary. And I could draw some parallels between that trip and this post's theme, but I think you got that part already.

These four books are examples of what I think good, smart smut is. Feel free to suggest your own favorites. The lurkers will be grateful, as will I.


Self-Pity Is for Suckers: My BlogHer14 10x10 Project Talk

Image description: Red-headed dork holding papers,
wearing a dress, speaking. In front of blue & purple BG.
Photo credit: Marla/@DvinMsM
This is the prepared text from my BlogHer 10x10 speech. Which went well, I think. I did go off script a bit but this is the core. 

Update: For extra punch, see the official LiveBlog of the entire opening keynote, and Liz Ditz's enhanced Storify version of my talk.

Hi. I’m Shannon, I’ve been blogging since 2003 at Squidalicious.com, since 2009 as a BlogHer Contributing editor, and since 2010 as an editor and contributor at Thinking Person’s Guide to autism. I’ve got three kids, they’re cute, all that.

My middle child, Leo, is 13, and has always been my dude. He's sassy, handsome, and still a snuggler, lucky me.

In 2003, when Leo was two, he was diagnosed with autism. This despite his pediatrician assuring me my cheerful, bubbly, affectionate son couldn't be autistic because he was cheerful, bubbly, and affectionate.

Since that doctor was not helpful, I turned to the Internet. And … the Internet told me my life was now officially going to suck. That Leo’s life was going to suck. That autism was nothing but suck.

To process this suckage, I started blogging. I titled my blog "The Adventures of Leelo the Soon-to-Be-Not-Autistic-boy and His Potty-Mouthed Mom,” because the Internet said I should want Leo to be not autistic. I should want Leo to be normal, whatever that is.

I let the Internet break me and see my Leo as broken. I embraced self-pity. I let it define me. I was not alone; at the time there were plenty of other prominent autism parent voices in the Blogosphere who were floundering right along with me. You want to talk about a pity party? We live blogged it.

But then the Blogosphere shifted. I started encountering parents who rejected the pity and the suckage. Some of them got in my face and told me I was a jerk for embracing self-pity, that I wasn't helping anyone with my Woe Is Me gospel. I wasn't ready for that. I'll admit it -- I recoiled, petulantly. And I blogged about it.

And then my Blogosphere shifted again. I started hearing from people who told me I needed to reject self-pity so I could get to work, because Leo and I had a tough road ahead and no one else was going to help us. I went to Catholic school, so I am always ready to get behind anything that smacks of martyrdom -- I blogged about that, too.

Then the Blogosphere shifted, yet again – and I found the people Leo and I needed. I found the autistic bloggers, who love, support, and accept my son – whether or not I ever manage to wipe that self-pity out of my eyes and see Leo clearly as the fabulous & unique person he is, and not as a pile of deficits. The blogosphere connected me with autistic people, parents, and professionals who told me that seeing autism as suckage was seeing my son as suckage. That he deserved better than a mom who saw him as broken and as breaking her life. And that is what I blog about now.

I can’t deny that autism comes with some suckage. Autistic bloggers don't deny it, so I can't either. But the hardest things about autism are hardest for Leo. Please believe me when I tell you it’s a much bigger deal to be the person who can't speak than the mother of the person who can't speak. And anyhow, being able to speak is not the same as having something to say. Communication takes so many forms, all of them valuable. The Blogosphere taught me that, too.

Rejecting self-pity keeps me focused on Leo, keeps him in my sights as an awesome and deserving human being. Who has a mom who now tries to believe in herself as much as she believes in him. Who now knows self-pity is for suckers who haven't invoked the full power of the Blogosphere.

I’m not saying people don’t have hard times. They do. I have, you have. But, damn, is it so much easier to get through those rough patches when your blogging connects with people who get it, and who care. And that aspect of blogging – the life-changing power of our beautifully networked hearts and brains – has only grown stronger over the past 10 years. Blogging formats may have diversified, but blogging itself still matters, so much.

The funny thing about me being here, talking to you, at this event, is that I’m not great at most Good Blogger practices, like strategically generating traffic and engagement. I suck at commenting. I’d slam my head in a door before I’d let anyone drag me into a conversation about branding. I don’t know how to blog about any thing other than my sucker of a self and my three kids and my own little bubble of things that matter to me.

And yet. Through being myself, blogging my truth, and making organic, real connections – I’m a published author. I’ve co-edited three books, including Thinking Person’s Guide to Autism. I’ve never stopped learning, and I've tried to give back by helping to build an ever-growing online community of 87,000 autism parents, autistic people, and autism professionals who flock together and learn from each other, daily. I’ve given interviews and talks on autism, iPads, blogging, and vaccines for all kinds of national and international news outlets and organizations, I recently guest-lectured at UCLA, and -- alongside many people in this room -- I stormed Capitol Hill for the UN Foundation and Shot@Life in support of global vaccines. It’s all kind of odd, really.

But a decade of blogging made it possible for a dweeb like me to do all that. It made it possible to find my people again and again and again, to read your stories, to gleefully message for hours with friends I’ve never met IRL, and to knit IRL friendships of choice rather than of proximity. It helped me learn to ride the wild life I’m living, and not obsess over some imaginary life that only suckers dwell on.

Don't be that sucker. And know that the people in this room and in the Blogosphere won't let you.


And here's the story about the dress I wore during the talk. Last summer, when Iz and I were in Ghana, we were invited by our Ghanaian hosts to a family wedding. Which was a huge honor. However, we only had our goofy Travelsmithy-style wardrobe available. But our hosts said: NO WORRIES and had their unbelievably talented seamstress make us custom dresses -- in 24 hours. We wore them to the wonderful wedding. However mine only fit perfectly when I was standing -- when I sat down in my wedding seat and turned to greet a new friend, my cleavage made the zipper on the back of my dress explode. My host, generously and ingeniously, gave me her kente sash to wear over my shoulder and down my back so no one else could see the back of my industrial strength and therefore extremely hideous bra. And then we went home and the seamstress fixed my zipper. And now it is my favorite dress that I wear for good luck whenever I can.


I'm BlogHer14 Bound. Are You?

The BlogHer14 conference is in one week, in fabulous downtown San Jose. I am speaking there. Twice! As you might have guessed by all those banners to the left. Are you coming to the conference? If not, here is the agenda and how to register*. Please come. Because I am freaking out a bit.

Old-timey camaraderie at BlogHer '06:
SJ & Laura & my natural hair color.
I am not freaking about speaking, not so much. I speak all over the place all the time (plus I spoke at BlogHer '08, BlogHer '10, & BlogHer '11). Speaking is monologuing and that is easy; small talk, & conversations with people with whom I am not already on a fart joke basis, is hard. And there are just not that many fart joke friends coming to BlogHer this year. Jen Myers, my long-suffering social crutch, had the nerve to go out and get an office job, damn her. Jenijen will be working her cute little butt off as a BlogHer staffer (as opposed to BlogHer 2006, where she worked her cute little butt off as a conference volunteer). Beloved SJ of I, Asshole? Also not coming. So if you are coming and you know me and you like fart jokes, please say so.

I am excited about next week's conference though. Because, ha ha ha ha, the funny BlogHer people have me and the very impressive Danah Boyd warming up the crowd for The Bloggess's conference opening keynote. (Danah & I are participating in the very cool 10x10 project.) The Bloggess shares extensive tone cues with SJ & I, Asshole, and Danah professionally groks networked teens like my Iz, so even if people throw rotten fruit at me, I will be on stage with cool people. Here is more info on that event:

Best-selling author of Let’s Pretend This Never Happened and blogger extraordinaire -- aka The Bloggess -- opens our anniversary conference with her special, and wildly successful, brand of off-the-wall humor, as she launches her second book, Furiously Happy.

10x10 Project: Danah Boyd and Shannon Des Roches Rosa look back at what the blogosphere built and look ahead to where we’re going, covering 10 years in 10 minutes.
Then I'm speaking again the next day, at the Special Needs Caregiving mini-con, along with Kristina Chew and Jen Lee Reeves. This will be three (!) hours of intra- and inter-communities communing, and I hope many different voices will be there so we can all learn a lot from each other. That might seem snarky, especially if you are imagining that sentence read in my typical speaking voice, but I am sincere. Hope to speak at, and awkwardly converse with, many many folks there.

The most exciting part of the conference doesn't involve me at all, though. I am talking about the Closing Keynote: Meet Us at the Intersection of Race, Gender, Feminism and the Internet, which echoes what may be my favorite BlogHer session of all time: 2008's Mirrors: Ours, the Media's, Our Cultures', and Our Kids'. The link between the two sessions? Unsurprisingly, the incomparable Kelly Wickham, AKA Mocha Momma. Here's what the closing keynote is all about, and who will be speaking:
Our hope is to host a conversation where we can be real, we can get uncomfortable, we can walk a mile in other women's shoes, and—most of all—we can walk away feeling like we know how to be better and do better. Understand more and speak up more. Together, we can extinguish the flame-war-ridden Web and be a part of the powerful and boundary-breaking Web. Are we all in?
  • Feminista Jones, BlogHer's own Sex and Relationships editor, who has been at the center of some raging Internet debates. 
  • Kristen Howerton, regularly raising her voice on the intersection of race and gender and faith at Rage Against the Minivan. 
  • Natalia Oberti Noguera, working for change within the power structure as founder of the Pipeline Fellowship. 
  • Patrice Lee, a conservative woman of color who immigrated to the U.S. as a child and represents an oft-unheard perspective.
Looking forward to seeing you at BlogHer '14, folks. Right? 


*So sorry, students; your passes are already sold out.


The Poppy Seeds

California poppies. Growing in my pavers.
[Image Description: Bright orange-yellow flowers
punctuating a small green bush, with long green
seed pods poking out at intervals, all growing in the
seam between dark gray patio paver blocks]
If you're a "life's little pleasures" sort like me, then perhaps you'll get why one of my favorite early summer activities is gathering California poppy seeds. 

Our poppies reseed themselves all over our yard (and between our pavers) without our help, of course, but it's tremendous, satisfying fun to pluck the just-ready, slightly dried pods and have them pop open in one's hands (or in a mason jar) and feel/see a shower of the tiny black seeds, knowing each one is a potential color explosion for the following spring.

I gathered many, many of the pods this summer. I also discovered that if you take still-green, not-quite-ready pods and put them in one of those big mason jars with the slightly narrowed tops and leave them in the sun to dry, they will pop open on their own. More seeds for everyone!

The place I'd left my growing seed collection and soon-to-pop pods was on our back yard patio table. After a couple of weeks, the seeds in the jar were one inch deep. I always appreciate measurable progress, and was pleased.

And then, one day, I walked outside and found Leo dumping all the seeds on the table. He looked at my face and could tell by my expression that I was shocked and upset -- because he immediately started saying "It's not okay!" which, is essentially, him prompting me to say what he thinks I'm going to tell him when he's doing something I don't want him to do.

But before I actually did say anything, I looked at what he was doing: he was rolling the seeds between his hands and the table top. He had not just found but created a deeply enjoyable sensory experience. He had no idea what the poppy seeds meant to me -- I'm not chatty about things that are precious to me, not IRL -- and he certainly meant no harm. Our house and yard are filled with tactile balls and tactile bins and the like -- what made the poppy seeds, so handily placed on the table we all use all day long, different from any other of the sensory options littering our none-too-tidy house?

What made it different was my pained expression. Which he instantly recognized as related to his actions, even if he had no idea what he'd done to make me make such a face.

So I took a beat, told him he hadn't done anything wrong, and told him to enjoy himself. He regathered and had a fabulous stretch of fun, rolling and thumping and exploring the many sensory options the poppy seeds made possible, and which was not an experience he'd previously had.

Recovered poppy seeds
[Image Description: a circular collection of
tiny blackish-brown spherical seeds, in a
bright orange bowl, seen from above.]
And when he was done, and had left the area, I was able to go back and gather up plenty of poppy seeds off the table and the ground. As you can see. Not the half-cup's worth I'd had before, but it's also not as though California poppy seeds are difficult to find or expensive to purchase in our area. And maybe I'll invite Leo to help me gather next year's seeds.

One Empathetic Dude
[Image Description: Young man with beige
skin, & curly short brown hair,
looking up & laughing, as water pours down
the glass panes over & behind him.]
This could have been a disaster -- me yelling, Leo getting yelled at for something he couldn't possibly have predicted. But it wasn't. It turned out fine for both of us.

What made the difference was that I took the time to see things from Leo's perspective. This perspective-taking is, as I mentioned last week, so critical with our autistic kids and with autistic people and with others in general (though, admittedly, I am struggling with empathetic perspective taking re: Leo's teen sister Iz). It only took a moment and a deep breath to realize that Leo hadn't done anything wrong, to regroup and recognize that my son had no context to understand how I'd react to his actions. It only took a moment.

Please don't forget to take that moment.


Join Me in Busting Vaccine-Autism Myths

Update 7/12: Here is the full transcript of my talk, with links to the Storify Twitter Chat and an audio recording of the entire event.

In less than 24 hours, I'll be the primary discussant in a Voices for Vaccines Conference Call and Twitter Chat about vaccines and autism. We'll be busting those vaccine-autism myths of course, but will also discuss how to be a vaccine advocate without inadvertently steamrolling autistic people like my son.

Parents should be afraid of deadly diseases, not autism. Autistic people have always been here (and they deserve to be vaccinated, too). But because of media-generated misinformation and outright hoaxes, some people still believe, wrongly, that autism is a vaccine injury -- despite landslides of evidence to the contrary. We need to fine-tune our advocacy efforts to reach such folks using facts, understanding, and compassion. I know those efforts can work, because they worked with me.

The conference call is at 9 AM Pacific/noon Eastern tomorrow, July 11th. It's free, but you do have to register. I'll be talking for about 25 minutes, then we'll do a Q&A. You can also join the conversation on Twitter at #VFVcall. Here's the event info:
To register for this conference call, you must email info@voicesforvaccines.org.

Like many people, you may not know much about autism, and may not know what to say to someone who wants to talk about autism in a conversation about immunization. You might worry that you will say something to offend or hurt autistic people and their families -- but you don't have to feel that way.

Please join us on Friday, July 11 at noon EDT (9 am Pacific) for a very important discussion with Shannon Des Roches Rosa. She will share what she has learned from autistic people and their families, including what they have taught her about neurodiversity and what they want you to know about autism.

Shannon Des Roches Rosa is an author and an outspoken advocate for neurodiversity who writes at her Squidalicious blog, is a contributing editor at BlogHer, and is a co-founder and senior editor of The Thinking Person's Guide to Autism. She has been published widely online and in print.
If you can't make the call, you can still educate yourself about autism and vaccines, with the articles on my Vaccines and Autism Pinterest page (and that should tell you how invested I am -- I made a damn Pinterest page).

Hope to hear from/chat with you tomorrow!

One healthy, fully vaccinated autistic dude.
[Image description: young man with beige skin and short curly brown hair,
wearing a turquoise tee and red shorts*, standing in front of
a low light gray cinder block wall upon which "life is good" is graffitied.]

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