4.02.2017

On World Autism Acceptance Day: How to Find Good Writing By Parents

Sitting on Rocks Is a Legit Thing. 
[image: Leo, a white teen dude, sitting on a
serpentinite rock on a grassy hillside.]
It's World Autism Acceptance Day! A day to honor Leo and our friends as valued, loved, and respected members of our communities.

What are some best practices for observing WAAD? As I wrote as part of general guidelines, at TPGA yesterday,
"Since our first and foremost goal is to encourage critical thinking on autism matters, we do need to be careful about instantly condemning those who support autism awareness. Remember to ask yourself: are they honestly working for the betterment of autistic people, or are they demeaning autistic people by using them as piteous props? If it's the former, carry on; if it's the latter, avoid or speak out whenever you can."
Unfortunately, when it comes to WAAD writing from parents of autistic kids, too many take the demeaning route. I find this approach quixotic at best: If you write smack about your kids in public spaces, how could you ever expect other people to treat your children well? As I noted at The Establishment:
"Parenting approaches differ, but mostly, everything we consider “good parenting” fulfills two basic needs: It makes children feel safe, and it makes them feel loved. Parents and non-parents alike tend to scorn any parenting approach that doesn’t meet these goals. That is, unless the kids in question are autistic — in which case parents are too often encouraged to pursue approaches that traumatize and alienate their kids." 
Parents, if you don't want to traumatize and alienate your kids, I suggest you learn how to recognize harmful writing about autistic children, and avoid falling into the same pitfalls. Here four too-common examples of such bad writing, why using these approaches are not useful, and what you can do instead.

1) "I am furious that people celebrate autism acceptance. My child suffers from autism and needs a cure."

Considering autism a curable disease is misinformed thinking. High-support autistic people have always been part of society. That's a fact. Autism is brain wiring. Also a fact. Conclusion: Autistic people need understanding and accommodations, not cures.

Sadly, parents who talk about curing autism are generally the ones most hostile to the concept of understanding their autistic kids. Yet parents need to focus on understanding their autistic kids, and supporting them to live the best lives possible, if anyone involved is to thrive.

Of course, if a child is having a terribly hard time, that is indeed nothing to celebrate. The problem is, too many parents define autistic "suffering" as being ill, being non-speaking, or being violent—and leave it at that. By throwing up their hands instead of pursuing support, they compound any suffering their own kids may be experiencing, and, if they have any influence, spread that suffering to all the kids of the parents who listen to them.

Here's the autistic reality these parents are willfully ignoring: if a child has medical conditions, parents need to address those, while understanding that their child will be healthier and therefore happier—but still autistic—afterwards. They need to understand that everyone communicates, even if they don't speak, and pursue communication options. And there are usually completely reasonable but easily missed factors when autistic kids are aggressive or self-injurious, usually medical reasons. Look for those reasons!

2) "Autism is Hard. There is no reason to celebrate something so hard."

Yes, autism is hard. Hardest for the autistic person who is not being supported or accepted, however. It is very hard for autistic people to be part of a society that does not recognize how autistic anxiety, processing time, sensory issues, social difficulties etc., can interfere with a person's well-being and ability to cope, and harder still when that lack of understanding and acceptance happens at home.

Of course, society's lack of autism acceptance and understanding make it hard for parents and families too. Which is why, instead of complaining about autism, parents should be fighting for wider-spread acceptance, understanding, and supports for autistic people (and their families), so that everyone can win.

3) "My child functions like a much younger child. Waaaaah."

No, your child functions the way an autistic person with developmental disabilities functions, for their age. And they deserve their interests and life experiences to be treated with respect. Why does it matter so much if they choose to spend their time differently from their non-autistic peers?

If you want your child to be happy, then you need learn to yield to and accept their preferences; as long as they aren't harming anyone, they should be able like what they like, even if their interests aren't what you anticipated or hoped for, and even if they are technically for much younger children. Publicly ridiculing or second-guessing your child's passions and development is not only bad modeling, it is questionable parenting.

4) "My child is disabled, unlike those quirky fakers who write neurodiversity articles, work in Silicon Valley, and fight for autistic rights at the national policy level."

Autistic people are indeed a diverse bunch, and that heterogeneity has only been truly recognized for about two decades. It's unclear to me why this is a problem, because that ideally means more autistic people are being identified and getting supports. Plus the autistic people these accusations are usually leveled at, like the staff of the Autistic Self-Advocacy Network, include and work very hard for the rights of autistic people of all abilities. (Most autistic people also consider themselves disabled, whether they have White House appointments or not.)

Parents would do well to read the thoughts of autistic people themselves on the autistic experience, to understand why these "not like MY child" accusations are both often untrue, and hurtful. Autistic commonalities are as real as autistic diversity, and what sort of silly parent wouldn't recognize or appreciate having freely shared insights on autistic struggles and tendencies their own child might not be able to convey?

Also, the autistic kids and adults with the highest support needs are the ones most likely to get those supports, especially in school; while autistic people with fewer obvious support needs are more likely to be overlooked, dismissed, remain undiagnosed, and as a result have debilitating anxiety and depression. Who is being disadvantaged, again?

----

Other strategies for identifying harmful parent writing include noticing where such parents post, and invoking the power of Google. So, if you read parent Ashlyn Washington's recent rant against autism acceptance in the Huffington Post, you might think her stance was legit because she'd been given HP editorial go-ahead—but with a single Google search of her name, you will discover that not only does she believe autism is vaccine injury (not a legitimate stance), she was also posting in the Contributors section, where any Tom, Dick, or Jill can let loose, seeing as "Contributors control their own work and post freely to our site."

I'll end by imploring reasonable, supportive readers like you to call out harmful parent writing when you can, on social media or in the comments. I realize that calling out is confrontational and therefore squirm-inducing; I don't like doing it either. Especially when folks who get called out dismiss criticism outright, or angrily frame reasonable critiques as personal attacks.

But the reason for calling out is not necessarily to get that person to change their behavior (though that would be great); it is to make them accountable for the hurtful things they publicly endorse, and let their readers know that writing awful, misleading, privacy-violating things about autistic children in public is not acceptable.

And with that, we're off to another hiking day, because hiking is something Leo likes to do. I can think of no better way to observe World Autism Acceptance Day. I hope you find happiness today, too.

3.29.2017

Reporters: Stop Excusing Murders of Disabled Children, FFS

While the internet is often a black hole, and articles published online can fade away after a news cycle or two—rarely to be read again—it is also a holding tank from which outdated and harmful articles can easily be retrieved.

Case in point: A filicide-excusing article from 2008, "Autism’s terrible toll: Parents risk hitting 'a breaking point,'" by Nancy Lofholm of the Denver Post, is apparently making the parenting group rounds again, according to writer and parent Jamie Pacton—and being shared with approval, damn it all.

Since the article does not have comments, and my email to the writer bounced, I'm posting my response here:

----

Hello Nancy,

I read your article on Autism's Terrible Toll with some dismay. I am the parent of a high-support, non-speaking autistic teenager, Leo, and I really worry that articles like yours are doing families like mine a disservice by making murder of autistic people—that is, my Leo—seem somehow understandable.

I don't believe you mean harm, quite the opposite. But I also think articles like yours are the rarely-questioned status quo. With that in mind, I'd like to share a recent article I wrote on this topic, which breaks down the role reporters like yourself can play in protecting and valuing the lives of people like my Leo. It includes links and resources for parents who are going through tough times.

Thank you for listening,

Shannon Rosa

3.28.2017

Happiness Is Resistance: Disneyland Version

We're still trying to visit Disneyland every year: Leo remains a huge fan, and making him happy usually means universal family happiness. And also because, given the current administration's dog-in-the-manger attempts to make everyone who is not a lock-step loyalist miserable, choosing to do things that make us happy is a form of resistance.

[image: J, a white tween girl,
sitting and reading at a table
outside in Tomorrowland.]
And we were happy at Disneyland, mostly. Our family dynamics are getting increasingly complicated: Leo and Mali are teens with their own interests and agendas, so they don't always want to spend time with each other—nor are they shy about making their sibling disinterest clear. (To be fair, this is exactly how I felt about my older brothers when I was twelve, and probably how they felt about me, too.) Next trip, ensuring that we actually are in The Happiest Place on Earth will mean bringing a companion for the youngest and/or another adult who enjoys hanging with my kids—ideally, my spouse. Though thankfully our youngest is now old enough that if she declines to go on Leo-preferred rides, I can plant her on a shady bench with a e-book and her phone, take Leo on the ride, and everybody wins.

More things that made us happy: We got to have dinner with beloved friends on our first night, complete with many not-quite-negronis for the adults, and nerdy balloon sword fights for the kids. One of the adults, a children's book author, told us an amusing story about dedicating one of her books to Mali: Her co-author brother was actually *in* Mali, giving a presentation, and all the kids in the audience were so thrilled that the book was dedicated to their country! The brother had to explain that in this case only, Mali was a little girl.

Sidebar: Now Mali is a much bigger girl. And is insisting on going by her middle name, sob (I have wanted to have a girl named Mali since I was Mali's age). So, alas but with respect: from now on, Mali will be J. in these pages.

About to go on "Nemo"
[image: Selfie of Leo and me. I have
on a Disneyland "Vaccinated" pin.]
Back to Disneyland: I proudly wore my Disneyland "Vaccinated pin," which you can sort of see in the photo to the left. Many thanks to my friend Matt for the gift! Or, I did wear it until Leo had me take it off. Park staff who noticed the pin smirked and thought it was great.

The root of Disneyland happiness is that it has become a place of soothing predictability and routine, where we can mostly relax because we know what we want to do, and how to do it. It is also nerd-friendly: A welcoming place for people who like to cite movie lines, as we did all day both days by paraphrasing Finding Dory, "I like Leo. Leo is squishy; "I like benches. Benches are squishy." It is also totally fine to sing Disney songs out loud—like the entire Moana Soundtrack. (We only saw an official Moana cast member once, which was disappointing.)

Strangely, even though we visited on a non-Summer, non-Holiday, non-Spring Break weekday, the park was still fairly crowded, at least for our peripheral space needs. And it was mostly full of little kids, teeming with tiny Elsas and Elenas of Avalor, and holy hell so many strollers parked everywhere, narrowing all walkways and often making it hard to get by.

Possibly this disproportionate use of space by loud tiny people and their gear even though the park was technically not busy according to the Disneyland Crowd Tracker was why we didn't see many people like Leo. I mean, I saw lots of kids in the lines at the disability access pass kiosks, and several adult friends wearing headphones, but no one as ... exuberant as my son.

Is it because the park is such a sensory assault zone? It can be really, really overwhelming. Leo is learning to self-regulate while visiting, usually with a sit-on-the-bench request. But I do know many families who just don't go to Disney parks, because they know that their kid would lose it amidst the noise and chaos and crowds (I have heard this about autistic kids of all support levels, mind you), or because the parents themselves share some of their kids' sensory sensitivities and, just, no. No.

Ladybugs Ride!
[image: Leo sitting in a red car in the spinning Ladybug Ride.]
There are some rides that Leo will not ride, due to sensory issues, like the too-jerky-for-his-taste loop-de-loop rollercoaster. Which is why I was surprised at how upset he was over the unavailability of an ride that throws its riders around even harder, the Tower of Terror. It has been closed, and is being converted into a Guardians of the Galaxy ride. We confirmed the ToT's unavailability with at least four walk-bys and constant reassurances that Yes, it is Closed. Still. (It had better be fricking awesome when it reopens, transformed.) Thank goodness the "Sully and Mike ride" and the "Ladybugs ride" were both still open, fulfilling our dude's happiness quotient for that area of the park.

Keeping the happiness alive also meant sincere dedication to going with the flow. Leo wanted many rides on the "Nemo" submarine and Star Tours rides, and we followed suit (not exactly a hardship). And after years of encouraging Leo to try to play the shoot-em-up games during the "Toy Story" ride, I've stopped prodding him. He's really not interested. It doesn't matter if it's a fine motor skill or inclination issue: He enjoys the ride, doesn't care about participating, and that is that.

We also were able to verify the rides he doesn't like or finds dull, and which we can cross off our list for now: Indiana Jones (the line is a nightmare for him, even with the disability pass), and the Jungle Cruise. I have to admit, I agree with him. Meh to both.

Tiki Room!
[image: Photo of Leo smiling
in Disney's Tiki Room.]
And then ... Leo discovered that the Tiki Room is a real place at Disneyland, and not just a song he listens to every day. Watching the pure joy of his epiphany was very sweet to witness.

However, the Tiki Room was also an example of the park's jaw-dropping cultural disconnections. How is it that, in 2017, the shlocky camp of the Tiki Room not only still exists, but exemplifies the icky disrespect to Polynesian culture that the careful, deferential creators of Disney's Moana tried so hard to avoid? How is it that, in this era of podcasts like the Stories-from-Hawaii Offshore, race/culture-exploders like CodeSwitch, and the unapologetically arch indigenous criticism/geekery of M├ętis in Space, we still have It's a Small World's USA representatives as vaguely 19th century white cowboys and farmers, occasionally paired with smiling Native Americans? How is The Jungle Cruise still featured wide-eyed "locals" getting their butts poked by rhinos, African "natives" dancing in bushes, and "head hunters"—with wares? How on earth do Splash Mountain's critter scenes, based on the no-longer-available-for-good-reason movie Song of the South, even exist? Choosing happiness doesn't exclude discussions with the kids about cultural insensitivity, and probably never will.

Star Tours! Star Tours!
[image: Leo wearing 3D
glasses on Star Tours ride]
The park employees ("cast members") had their own part in keeping our happiness going: they were so kind, and so many of them greeted Leo's expressed enthusiasms with big sincere "hello"s. When I was visibly having a tough time, an ice cream kiosk dude yelled from across Main Street to ask if I was OK, then gave me the information I needed. We had a long and pleasant conversation with the disability pass kiosk worker, about when was best time to use the pass and on which rides (morning is the worst, mid-day/mid-afternoon best)—and then, noticing that we were ending our ability to hold it together, gave us a pass to enter the last ride Leo wanted to go on immediately, which I guess they have discretion to do under urgent circumstances such as people really needing to leave the park early but also were unable to leave the park until they go on a certain ride. (The most delightful cast member by far, however, was the guy messing with the park's stringent dress/grooming code by wearing a wig with Princess Leia buns.)

And personally, I love staying at the on-site hotel, and being able to retreat as needed—despite the guilt associated with such indulgence. I adored the ease of being able to walk back into the hotel directly from California Adventure, when the kids needed a break. I appreciated getting that early "Magic Hour" of extra-low attendance park access. And I was grateful for the super-chill, cozy, kid-friendly bar/restaurant (with legitimate, and reasonably-priced, negronis) in the lobby. For some reason the hotel rooms no longer come with eponymous stationery or robe, which is too bad as I like to write letters and J. likes to lounge in the robes, but maybe that's just policy now.

It was a happy time, this latest trip to Disneyland. I learned a lot about how to make it even happier, next time.
Our Three Mouseketeers
[image: Selfie of happy Leo, me, and goofy J.]

3.26.2017

The Boy Who Can No Longer Have Green Straws

Sadness.
[image: photo of Leo reaching for a green
straw at Starbucks, even though he knows
he shouldn't have one -- and why.]
What you see to your left is a very, very sad young man.

After years of finding solace and calm in his beloved green straws, it turns out that chewing on those straws exacerbates a chronic headache issue. They don't cause the headaches, but they do make them worse. Which means that Leo shouldn't have green straws any more.

As with most matters, he is being a good sport about the green straw restriction. He still likes to go to Starbucks, but, upon arrival, has to content himself with a multigrain bagel instead.

Our thanks to all the lovely people who have mailed and personally delivered green straws to Leo over the years, and especially to the Agents of L.U.S.T. Your kindness, thoughtfulness, and cunning remain greatly appreciated.

3.20.2017

Spotting Autism Misinformation: The Credentials Gambit, and The Cherrypicker's Bluff

Last week, I gave a workshop on How to Find Autism Information That Will Help You. But then I realized I'd neglected to specifically highlight two of the most common ways in which autism misinformation spreads.

Let's call the first one the Credentials Gambit. This happens when a person is affiliated with a respected institution, and as a result people assume that they are trustworthy. Such individuals even get cited in mainstream news stories when media outlets either lack staff with the expertise needed to identify pseudoscience, and/or they prioritize clickbait. Examples include but are not limited to: 
  • Jenny McCarthy's adamantly vaccine-exempting pediatrician Dr. Jay Gordon at UCLA 
  • Anti-vax crusader "Dr. Bob" Sears of the Dr. Sears parenting advice dynasty
  • Environmental toxins autism causation researcher Dr. Irva Hertz-Picciotto of UC Davis
  • Pseudoscience-flogger Dr. Martha Herbert of, somehow, Harvard. 
    • Herbert's latest implausible culprits for autism causation include cell phones and Tylenol. She is responsible for countless eye-roll sprains.
Source: JMU Be The Change
[image: illustration of pants on fire]
We'll call the second the Cherrypicker's Bluff. In this case, a quotation or citation is taken out of context, or used inaccurately. The cherrypicker is banking that their readers will be instantly outraged—yet disinclined to actually read the article, or do any fact-checking. (This approach is also in constant use by the current U.S. administration.) 

For an autism-specific example: Anti-neurodiversity blogger J. Mitchell recently tweeted of Steve Silberman's 2016 Autism Society of America interview that:
"#stevesilberman accuses critics of #neurotribes as either skipping over parts of his book or lying. bit.ly/2mBuoQG"
But if you click through to the article, you'll notice Silberman actually said:
"I’m really puzzled by the notion that my book focuses primarily on “high-functioning” individuals. [Gives examples of high support autistic individuals from book.] These passages in the book make for very painful reading — but I have to assume that the handful of people who accuse me of “whitewashing” autism either skipped over these parts, or have another agenda for lying about my book that way."
Silberman is not therefore not bristling at critics of his book NeuroTribes in general, but rather expressing frustration with people who, well, cherrypick the book to make unsubstantiated claims about its representation of autistic people of all abilities. And rightfully so -- Mitchell was being disingenuous.

This need for constant vigilance sucks, honestly. It is both exhausting and jading to have to verify any autism information you run across. It also sucks to call people out by name, as I have here; my goal is to help you learn how to avoid questionable autism sources, not to provide the folks mentioned above with fodder for dismissing legitimate criticism as personal attacks. But to learn, you need examples. And these folks have worked hard to be just the examples we need.

But, as always: onward! We must remain skeptical, yet empathetic. And we can take heart in being able to rely on reliable autism information resources, too.


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