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published online can fade away after a news cycle or two—rarely to be read again—it is also a holding tank from which outdated and harmful articles can easily be retrieved.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.
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.
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.
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.
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 Métis 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.
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.
 |
| [image: J, a white tween girl, sitting and reading at a table outside in Tomorrowland.] |
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.] |
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.)
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.] |
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.] |
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 Métis 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] |
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.] |
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.
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.)
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.
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
- "Dr. Jay" seems to value celebrity endorsements more than public health.
- Anti-vax crusader "Dr. Bob" Sears of the Dr. Sears parenting advice dynasty
- Dr. Bob may lose his license to practice, due to charges of medical negligence.
- Environmental toxins autism causation researcher Dr. Irva Hertz-Picciotto of UC Davis
- Dr. Hertz-Picciotto continues to pursue theories that were written off as implausible ten years ago. Current research demonstrates that autism is inborn.
- 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] |
For an autism-specific example: Anti-neurodiversity blogger J. Mitchell recently tweeted of Steve Silberman's 2016 Autism Society of America interview that:
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."#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."
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.
3.17.2017
Not Irish, Today or Any Day
I'm Shannon because my oldest brother got to pick my name. I was born while he was in kindergarten, and he was sweet on a classmate with that name.
I dye my hair red. It's actually brown. Or, going by my roots, mostly gray.
I am not Irish. Family lore has it that some of us got chased out of Ireland ages ago and ended up in Scotland, but Scots is what my mom's side owns and celebrates. (My dad's side is French-Canadian.)
I will most likely be drinking margaritas tonight. Which are faintly green, true. I'll be avoiding bars with shamrock decor however.
But, hey, Happy St. Patrick's Day.
3.16.2017
How to Find Autism Information That Will Help You
 |
| [image Black text on yellow background with a black inkspot on the left, reading, "How to Find Autism Information That Will Help You Shannon Des Roches Rosa Senior Editor, Thinking Person's Guide to Autism www.ThinkingAutismGuide.com"] |
These questions were the crux of a workshop I gave last weekend, at the annual Support for Families of Children With Disabilities resource fair in San Francisco, on How to Find Autism Information That Will Help You. (I also moderated the workshop on Supporting Autistic People Through Meltdowns, Aggression, and SIBs by Dr. Clarissa Kripke, Brent White, and Lindsey Anderson.)
Since I am a chronic worrier, I thought only a handful would show up. But the session was full, and people had lots of questions—plus many really wanted a record of the talk. So, here are the topics I covered, and please let me know if you have any questions.
How to Find Autism Information That Will Help You
My Background, and Workshop Goals
- I am the senior editor and co-founder of Thinking Person’s Guide to Autism: A website, book, and community of parents, autistic people, and professionals.
- Please learn from my mistakes, so you don't make the same ones.
- You need to find tools that will help you and/or your family live the lives you all deserve.
- It's ok and necessary to acknowledge when things are hard, and why.
- Our society is unfriendly to autistic people. This is unfair. This is why we’re here today.
- Historical and cultural understanding and acceptance of autism vary. But in the U.S., information is often flawed or wrong.
- Autism is mostly inherited. Many parents are undiagnosed, or have some autistic traits. So, remember self-compassion.
- Critical thinking skills help, a lot.
- Person-First versus Identity-First language
- “Person with autism” vs. “autistic”: respect the language people use for themselves, also be mindful of when its appropriate to derail important discussions because of language.
- Functioning labels: Not useful
- Why “high functioning" and "low functioning” don’t mean anything
- Medical model vs. social model
- Autism is neurodiversity and disability, not disease
- Who do you trust, if you’re new to autism?
- Autism professionals: Have experience with populations. But not necessarily a true understanding of autistic experience.
- Autistic people: Lived experience. Valuable if your loved one/client/student is non-speaking, and/or you are newly diagnosed.
- Presumption of competence (this is the opposite of denying intellectual disability)
- No “magic window” for providing supports
- Recognition of autistic people’s humanity, avoiding “burden speak”
- Understanding of, and respect for, diverse autistic experiences, including why "normalization" is not a useful goal
- How do you identify bad information? From science journalist Emily Willingham:
- Is this practitioner or vendor promising miracles that no one else seems to achieve?
- Is the person also asking for money?
- Does scientific research support their claims, or are there only individual (often emotional) testimonials?
- Does the approach aim to help, or to control?
- Whose interests does the approach serve?
- Understanding that autistic learning styles and needs vary greatly
- Absolute willingness to accommodate autistic students’ disability-related needs
- Presumption of competence: Curriculum, communication, complexity of needs
- Experience coupled with empathy
(This is not, by any means, a comprehensive list.)
- Policy and Advocacy: Wright’s Law, UCSF Office of Developmental Primary Care, The Autistic Self Advocacy Network, The Arc
- Autistic Experiences: NOS Magazine, Autism Women’s Network, AutChat, Invisible Strings, Unstrange Mind
- Research: Emily Willingham at Forbes, Left Brain/Right Brain, Spectrum News
- General: Real Social Skills, Ollibean, @SteveSilberman and NeuroTribes, Thinking Person’s Guide
- Parenting: Respectfully Connected, Diary of a Mom
(Also not a comprehensive list; try to use what you've learned here to identify other non-useful resources.)
- General: Autism Speaks, TACA (i.e., Talking About Curing Autism), anyone who considers “neurodiversity” a bad word
- Research: Generation Rescue, anyone who cites pseudoscience or “autism epidemic”
- News: Age of Autism, The Mighty
- Housing/Adult Services: VOR, Orgs that oppose supported decision making
Subscribe to:
Posts (Atom)