5.12.2019

Dear Other Mothers of Autistic Kids: I See You

A Mother's Day gift from Leo. 
[image: Small decorated terra cotta pot with
emerging seedlings. A printed icon attached to
a popsicle stick is stuck in the soil, has illustrations
of four flowers, and reads, "Flowers for Mom".]
For Mother's Day here in the United States, I want all you other moms of autistic kids to know that I see you, and that you are not alone.

----

I see your joys, and I see your sorrows.

I see you when you are having a tough day yet still manage to interact with your child with respect and kindness.

I see you when you keep your voice calm during crises, because you know your child is extra-sensitive to emotions and they need you to help them keep it together, or get it back together.

I see you when you don't blame your kid for things they can't help, like meltdowns and accidentally breaking things.

I see you when you can't afford to replace the broken things, and you still don't blame your child.

I see you when you defend and protect your child when other people try to blame them for things they can't help.

I see you when you stand up to people who think they can talk smack about your child like they aren't present, and may be absorbing every word.

I see you when you correct, side-eye, or edge away from people who don't know any better than to view your parenting life as something to pity.

I see you when you are cool with your kid's visceral need to sing, hum, flap, stomp, stim, or line things up, even in public—and you make sure your kid knows it.

I see you when you negotiate with siblings who have a tough time with their autistic sibling singing, humming, flapping, stomping, stimming, and lining things up, because they have their own sensory and neurodivergence things going on.

I see you when you teach your child, and gently remind them, about respecting other people's spaces and sensory needs too.

I see you when you teach their child that their "no" matters, however they express it.

I see you when you just don't go some places, because they're too stressful for your child.

I see you when you make a hasty exit from places you really thought your child would like, because they turn out to be too overwhelming for your child.

I see you when you retry going to those places a few years later, because your child is growing and maturing and maybe they'll be OK with those places now.

I see you when you visit places repeatedly because they make your child so happy, and when your child is happy, so are you.

----

I see you struggle after your child's autism diagnosis, because everything is so new and overwhelming, and useful, hopeful information is so frustratingly hard to find.

I see you when family members just don't know what to say, and other parent friends drift away.

I see you when you find parents who do get what your kind of parenting is like, and help you find the useful, hopeful information you need. I see you embrace that solidarity.

I see you when you find private spaces to openly talk about your kids and your parenting, and with people who empathize and understand—without judging you or violating your trust.

I see you when people say awful things to you about your parenting, and you shake it off because people who think insults are the same thing as arguments aren't worth your time.

I see you when you cry because mean and thoughtless people talking smack about you or your kid sucks, and sometimes you can't just shake off mean and thoughtless speech.

I see you when you struggle but take the time to listen to other parents of autistic kids who are struggling, too.

I see you when you listen to people who make you rethink your approaches to parenting and autism, even when it's hard to hear you may have made mistakes.

I see you when you realize that your autistic child experiences the world very differently than you do, because you aren't autistic.

I see you when you seek out autistic perspectives to help you understand how your child experiences the world, so you can advocate for them effectively and empathetically.

I see you when you realize that, hot damn, everything is so much easier for everyone in your family now that you have a better understanding of why your autistic child does what they do and wants what they want.

I see you when you have a hard time not because your child is autistic, but because you share some of their autistic traits, and having those traits makes the demands of parenting extra-hard.

I see you when you tell people that, actually, you're autistic too—and they suddenly start treating you differently.

I see you when you realize there are really OMG really a lot of other autistic and neurodivergent parents of other autistic kids out there—even if many of them don't realize it yet.

I see you when you reach out to and mentor other parents who are new to parenting autistic kids.

----

I see you when you're up in the middle of the night because your kid is up, too—and it's hard, but you don't blame your kid.

I see you when you can't help falling asleep the moment you sit down.

I see you when the school bus driver then knocks on your door with your kid because you really did not mean to fall asleep and you spend at least five minutes apologizing while horrified.

I see you when you triage matters like laundry and ideally balanced meals because there are only so many hours in the day and at least some of those need to involve you sleeping.

I see you when you decide that a life spent triaging is still a full life.

I see you when you go to the mat for your child's education and accommodations and communication and medical needs, even when those are uphill and seemingly fruitless battles—and even when you are sleep-deprived.

----

I see you when you never have a day off of parenting, and still find space for laughter and fun.

I see you when you never have a day off of parenting, and wonder how you're going to get through the next few hours.

I see you when you don't have the supports and respite you and your child need and deserve.

I see you when you never give up on advocating for your child.

I see your joy when your child does something "they" said your child might never do.

I see you when you accept that your child may never do some things, and you adapt.

I see you when you make sure your child knows how much you love them, and that you don't expect them to show their love in exactly the same way.

I see you when you learn to see what makes your child happy, and share in their specific and intense joys.

I see you when you stop caring about whatever "normal" means, and start cherishing "happy" or even "content" instead.

I see you when you are your child's safe space, especially when the rest of the world makes being autistic so hard and so stressful.

...and I hope you have other people who see you too, and listen to you, and love you for everything you do for your family.

4.22.2019

Visiting Zion National Park While Autistic

Because I am very smart, it only took me ten years to realize that Zion National Park is a mere three-hour drive from Las Vegas, where we often stay with family. For us, that's day-trippable. I wasn't sure if Zion would be an ideal place for our team, but as last week was Leo's Spring Break, we were looking for new adventures, and our friend and fellow road-tripper Dr. Deb Karhson was game, we decided to see if Zion was our kind of place.

Oh yes, it was.

First of all, we are all about Transportation Days. If we can spend a day riding buses, trains, subways, ferries, boats, trams, and/or cable cars, that is a day in which everybody wins. And Utah's town of Springfield, AKA the gateway to Zion NP, has a clean, efficient, free shuttle bus service. Yes! We won! (Parking in Springfield was not free, but it was not exorbitant either.)

[image: Deb Karhson, me, and Leo riding the free shuttle bus
from the town of Springfield to the Zion park entrance.]
Another reason we were heading to Zion is that it is in fact a National Park. And people with disabilities can get life-long free Access Passes to National Parks. And I thought Leo should have an Access Pass. So I brought all his documentation—birth certificate, passport, diagnosis paperwork, most recent IEP, etc., to prove that yes in fact, our dude is who he says he is and yes, he is disabled.

Turns out the ranger believed Leo without any of that, and just needed him to sign his name (and waited without comment or prompting during that process, which for our dude takes as long as it takes). OK then! Now Leo (and anyone who comes with Leo) can get into any national park, and can even get the car that Leo rides in, into those national parks. I think the Access Pass is an excellent program and I am grateful for it.

We then headed to the next part of our excellent day, the Zion NP free shuttle, which takes visitors to nine different parts of the canyon, with on/off privileges at every stop. Except, d'oh:

[image: Leo next to a very long line of people waiting to board the
Zion National Park free shuttle bus.]
We were there on the Friday before Easter Sunday, which turned out to be a Really Busy Day. The rangers said they had Summer attendance but Spring staffing and shuttles, so we ended up having to wait for 30 minutes to board the bus. Thankfully, waiting for a bus is a perfectly acceptable way to spend one's time, according to the teenager in our group. Whew! 

We then rode up and down the canyon, possibly more than once. We got off the bus at Zion Lodge and poked around a bit, but we'll need to go back again to get our usual hiking on—the crowds made the trails inaccessible to our party, for various sensory reasons. The crowds also made for waits at many of the shuttle stops, which could have been an issue if we had had a crisis and needed to board right away, as the park has no priority boarding policy for people who have a hard time with lines. I look forward to heading back on a less-bustling day.

But, damn, Zion was so beautiful. The temperature was warm but not intolerable, flowers were blooming everywhere, and the skies were as blue as any I've seen. I did not even try to capture that beauty, as it is staggering on a scale incomprehensible to my puny camera phone. Let's just say that there's a reason there are windows in ceilings of the buses. You should see Zion yourself if you can, or watch a dedicated video.

[image: Leo from behind, looking down the Virgin river, from a bridge.]
Also note that there were lots of places to rest and chill, even with the crowds. Benches and lawns and more. This is important for our crew, which requires downtime. Also important: Water fountains and spouts with tasty, clean Zion spring water everywhere. Don't forget to bring your reusable water bottle!
[image: Leo and me lounging on the lawn in front of the Zion lodge.]
And finally, we were glad to have Deb along with us. I think sometimes Leo gets bored of me, as teenage boys tend to do with their mothers, plus Deb is the least boring person on earth and Leo loves her (as do I). Also Deb says she misses her brother, who lives in another state, and who is a lot like Leo. Then there's that Leo's dad doesn't like the two of us traveling by ourselves, but there aren't a lot of people who think traveling with us for a few days is a vacation. So, more gratitude on my part. Thanks, Deb!

[image: Leo and Deb on the grass at Zion Lodge, seen in
profile. Deb is cupping Leo's cheeks and he is smiling
at her.]
If you or your family member are autistic and/or disabled, and you've been to Zion, I'd be interested to hear about your experience. For now, I can report that we had a wonderful time, and I am raring to return.

3.28.2019

Leo's Adventures in Disneyland, 2019 Edition

image: Leo in front of a "We're Monsters, Inc." poster with four monsters posing jovially, while waiting in line for the ride
The Monsters, Inc ride is a perennial fave.
[image: Leo in front of a "We're Monsters, Inc."
poster featuring four monsters posing jovially.]
It's been eight years since Leo's first successful trip to Disneyland, when we discovered that, for him, the Land of Mouse really is The Happiest Place on Earth. We now try to make annual pilgrimages, because Leo deserves to be happy and when we can make that happen, we do.

Here's how the latest trip went, and how we made it happen—because unfortunately, visiting Disneyland is also expensive AF. Note: this go 'round it was just me and Leo. Seymour and Iz were in New Zealand (Iz is doing a college semester abroad*) and J and Leo have some competing access things going on just now. J drove down with us, but spent the night at a local friend's and went to the park with them separately. We did meet up with J and crew once to check in.

One of the most pricey parts of Disneyland is the tickets. Leo wants to see both parks, not just one, as he has has a two-park circuit that we follow for optimal joy. That means $$$ for a park-hopper pass. Luckily, we live in California, and our regional center has a program called Community Involvement (CI) that provides discounted Disneyland tickets. If you live in California and you or your child are regional center clients, ask about this! (We were lucky; our social worker told us about the tickets, but just because yours hasn't doesn't meant it's not an option. Ask!) The CI dates available are limited and subject to blackouts, but the savings are significant—and allow provide discounts for a limited number of accompanying family members.

More routine/joy: we stayed at the Grand Californian Hotel. This is important, because being a hotel guest means access to a "Magic Hour" for hotel and other select pass holders, before the parks open to the general public, and during which lines are extra not-crowded. However this meant we had to pay for the hotel room. For this, I am beyond grateful to Leo's grandparents and other family members who understand how much going to Disneyland means to Leo, and gave him cash for his birthday and Christmas that we were able to use for the hotel room—because otherwise and even during "low season," room prices at this place verge on imaginary. (Though the same Magic Hour benefits hold for guests of the Disneyland Hotel and Paradise Pier hotels, which are slightly less astronomically priced, Leo's routine for as long as he's been going has been the Grand Californian.)

Selfie of me and Leo in a hotel hot tub.
[image: Selfie of me and Leo in a hotel hot tub.]
Staying at the hotel meant using the hot tub and pool the night before. This is important. Because we always use the hot tub and pool when we go to Disneyland, and Routine is Life. We both like pools and hot tubs.

We have most things Disney figured out. The one unpredictable factor is lining up to enter the park in the morning. We need to be there relatively early because if we have to wait in a long line at Town Hall to get Leo set up for Disability Access Service, then that cuts into his Magic Hour relaxing rides time. However, if we end up being surrounded by kids who are crying or whining (which is an act of the goddesses and no one's fault), that is distressing to Leo and we can't stay in line.

As always, we gave the park entry waiting line a solid try. And after a few minutes, we were surrounded by crying kids. I tried not to panic, and asked the people standing behind us if they would hold our spot, which they kindly did. I then took Leo around the side of the entry kiosks to talk to a gate agent, and told them about our pickle. Much to my relief, they were able to help us out. We might not need this accommodation next time, but it is good to know that the staff will make those kinds of accommodations if requested.

FU Straw Ban
[image: Leo waiting to ride Star Tours, looking hip with
3D glasses, nonchalant attitude, and mouth-held straw.]
We were the first people in line at the Disneyland Town Hall, and Leo's Disability Access Service (DAS) pass—which is tied to the entrance ticket you bring everywhere with you—was activted forthwith. So many exhalations.

The current version of the pass (there have been several iterations over the past few years) meets Leo's needs beautifully. If you've not used the DAS before: it makes it possible for people like Leo who have a hard time waiting in lines to have the shortest line experience possible. This doesn't mean jumping lines, though; you get assigned a "return time" for the FastPass or disabled access line entrances that is roughly equivalent to the ride's current standby (regular folks, non-FastPass) waiting) time. This means that if the wait time for Pirates of the Caribbean is 45 minutes, you get to spend those 45 minutes doing something that is not waiting in line, like going to the Tiki Room—and then you can come back to the FastPass entrance any time after your DAS-appointed return time.

(Apparently you can also use the DAS in conjunction with the regular FastPass service, but that is more planning and executive function juggling than my head had space for, and we were perfectly happy using the DAS alone.)

[image: Photo of a MedAlert safety bracelet
clipped onto Leo's pants' belt loop.]
A final logistics note: As Leo has, on occasion, followed his enthusiasm more quickly than I could keep up with him, I wanted to ensure he had a visible form of ID with my phone number and his MedicAlert info on it (even though, as I learned, The Mouse has eyes everywhere and escaped kids get returned to parents surprisingly quickly). We used Safety Tats for a while, but they aren't that obvious, especially during cold weather which means long sleeves, and they also don't have enough information for some of Leo's medical considerations. Leo is also not a fan of safety bracelets or other medical ID tags. But I figured out that if I use a metal binder ring to attach a metal safety bracelet to his belt loop, he is not only OK with that but considers the bracelet chain an excellent fidget. Another win-win.
[video description: Leo rubbing his hand along the wavy
metal guardrail at the Nemo submarine ride line.]
Overall, a lovely time was had. Though it was a holiday week, it was a Tuesday, plus the park wasn't as crowded as the IsItPacked Disneyland Crowd Forecast foretold. Leo got to ride all his rides, several more than once. We found more spots of joy, like the stim-worthy wavy metal railguards along the lines at the Finding Nemo submarine ride. We also found many spots of quiet and regrouping and rest, such as the circumnavigating Disneyland Train that lets you ride indefinitely. These were important, as were the Benches Everywhere (though New Orleans Square could still use more benches). 

The only real bummer was the brightness. The weather report said it was going to be overcast, so I didn't bring hats. Which meant that once we found ourselves squinting (a situation that leads to horrible headaches for our young hero), hats needed to be purchased. And there is no getting a non-merch-branded hat in Disneyland; I looked. So I ended up, reluctantly, with a Darth Vader trucker hat while my companion scored a "P. Sherman, 42 Wallaby Way, Sydney" baseball cap that was the least obnoxious option. (I am old and grumpy and getting tired of branding and merch everything everywhere all the time. Except for at the new Guardians of the Galaxy ride. That was cool.)

The Guardians of the Galaxy ride has so many Easter eggs!
[image: Leo next to a painting of The Collector and The Master
laughing while playing a game at a table.]
A final happy result: Leo spent the months leading up to our visit watching Disney park ride-throughs from parks all over the world. As we made him a bunch of his own ride videos while were were there, and made them part of his YouTube channel, he can now watch videos of himself riding rides at Disneylang on our YouTube-connected TV as easily as he can watch his favorite Netflix shows and DVDs. Sometimes I really do love living in the future:



[image: Selfie of me and J in front of the Vasquez Rocks.]
It gets better coda: Road trips have sometimes been hard with our youngest two. It is a mark of how much they have both matured that when the main freeway pass between the central valley and Los Angeles got shut down due to snow, and we ended up sitting on the freeway for four hours and were eventually turned around and had to to do a three-hour detour and did not reach our destination until 1:30 AM, they were both good sports about it and the situation was totally manageable. It is a mark of how my approach to life has changed that as long as my kids were not having a hard time, I was cool with whatever needed to be done, and am just glad it all worked out, and did not have a panic attack or meltdown. Plus when we woke up, we discovered we were five minutes away from one of the most iconic Star Trek locations in the Southland. It's hard to be mad about geekery opportunities.

 ----

[image: Photo of Seymour's hand holding up his gold wedding
ring next to the volcano that was the film version of Mt. Doom.]
*When I studied abroad in Ghana nearly 30 years ago, making a phone call to my parents was only possible at the airport, and I had to arrange the phone via mail weeks in advance—because that's how long the mail took. In contrast, Iz can and does text us all day long, time differences allowing (she is three hours behind me, but in tomorrow's time). I much prefer the contemporary situation, now that I'm in the parent position. Also: She and Seymour found the one true ring!

11.09.2018

Eighteen Years. Eighteen Years. (Holy Hell.)

[image: Smiling Leo, taken this morning.]
Leo turned eighteen years old today. Like nearly all parents of newly-minted-18 year olds, I can't f***ing believe it. But I think I'm ready. I think Leo's ready, too.

Leo's ready because birthdays mean parties! One at school today, with homemade carrot cake (a laughable nod at "eating more healthfully"), and another tomorrow with his friends and family. Plus today we'll take a trip to In-N-Out for an otherwise forbidden milkshake. There will possibly be a man-sized hammock chair arriving later today (shhh). And we will listen to The Candy Band's "It's Your Birthday" and The Ting Ting's "Happy Birthday" all day long. Yes!

I'm ready, on many levels, if not on the plane containing my emotions: I liked having little kids! Little kids are fun! Teenagers are hard! And adult kids don't need you as much!. (I'm less thrilled about all the post-18 paperwork and services changeovers, but that is the path we're on and I'll reward myself with a beer or a bowl of Lucky Charms once it's all completed.)

More significantly, I feel like we've made it to our own version of the Promised Land. Leo is no longer an autistic child, he's an autistic adult. A happy autistic adult. That's something to celebrate. While anyone who's ever spent time in our house knows that we would never pretend everything in Leo's life is easy always because often it is really REALLY not, we know more often than not how to support him in doing what he wants to do, learning, staying healthy, and being content. I feel like we are lucky more often than we are not.

Expanding Leo's contented space to work for our entire family has meant relearning and readjusting some family dynamics: Now that all three of our kids are teens, we are smack-dab in the middle of Competing Access Needs land, a place in which our neurodiverse trio of kids can't always accommodate each other and in fact are sometimes explosively incompatible—often for reasons none of them can control.

Logistically. this dynamic means that, for the first time in almost a decade, our family will be embarking on separate Thanksgivings: Leo, Iz and I to one destination with my family, and Seymour and J with the Rosenberg grandparents. We are all cool with this. And you should be, too. It's what we need to do, and it's what works.

A decade or so ago I would probably have used this space to bewail what "autism" was doing to my family holidays. Today I am thrilled that we're confident enough in our son and in what works for our family to make the choices that work best for everyone. Not just for Leo. Not just for his siblings. Not just for me and my husband. For all of us.

But first, we party. Happy birthday, my dude. I love you so much.

[image: Barely awake Leo, taken earlier this morning, in front of a black-and
white photo of barely awake toddler Leo with the exact same expression.]


10.29.2018

On Creating "Social Apps" for Autistic Kids

Photo © Shannon Des Roches Rosa
[image: Leo chilling in a medical office
lobby, with an iPhone and headphones.]
I don't do as much autism and tech advising as I used to do back in those frontier iPad days, but people still ask me about best practices for tech and autism, especially about apps and games for supporting autistic kids in the area of social skills.

And here is what I recommend: Tap into resources on how to create software and social approaches that actually help autistic kids, instead of trying to get those kids to conform to non-autistic social rules. It's not that learning the "hidden curriculum" (as Judy Endow writes) isn't important and useful, but it's that all the burden is usually placed on the autistic kids to change their behavior, when often they aren't doing anything wrong, just different, or for different reasons or perspectives.

Here are some starting materials, please feel free to suggest more:

10.05.2018

In a Different Key and The Hypocrisy of Mainstream Autism Coverage

Last night I attended John Donvan's and Caren Zucker's talk at Stanford University, in which they discussed their "Story of Autism" book In a Different Key and its forthcoming film. I should be clear: I am not impressed by the authors or their book, as I find both hypocritical and disingenuous: belittling autistic people who stand up for the rights of autistic people of all abilities, while lauding parents who are equally unapologetic in fighting for their autistic kids' rights; framing the murder of disabled children as the unforgivable act it is when Nazis do it, but as somehow understandable when "loving" parents do it.

Photo via SF Autism Society's public Twitter feed
[image: In a Different Key co-authors John Donvan and Caren Zucker,
seated and laughing together during yesterday's talk at Stanford.]
Still, I went, because I was hoping Zucker and Donvan had absorbed some community feedback about the messages their book got wrong in 2016, and that maybe now they would have better messages for the audience, and in their film.

No such luck: They doubled down on matters like ABA apologetics, and also on their disdain for autistic self-advocates—who in their opinion aren't really disabled. They even claimed that Steve Silberman's book NeuroTribes, which is also an autism history and which was published a few months before their own book, is more about making self-advocates proud, as opposed to their book which tells the stories of higher-support autistic people. Which is quite the headspin for me, given that an entire chapter of Silberman's book is about ... my son Leo.

I really need to stop being surprised when banner-carriers for mainstream attitudes about autism reject the insights and grievances of autistic people (when they don't support the authors' preconceived notions, at least). Sitting in that audience was not that different from watching Brett Kavanaugh's indignation during his confirmation hearing: Zucker and Donvan also were upset when the people their work harms spoke out, and also invoked their work on behalf of people with disabilities as a Good Character Free Pass. Nor is it surprising that they and their host kept mentioning In a Different Key's Pulitzer nomination: Yep, the mainstream U.S. media gave a high-profile book about autism but excluding self-advocate voices its imprimatur. This is not a shock to anyone who has watched a parallel mainstream media industry shower its highest honors, the Academy Awards, on non-disabled actors who play disabled characters.

The talk wasn't all awful: Caren Zucker made a case for radical inclusion using the example of Donald Triplett, and showed wonderful footage of him living a happy live in an accepting and supportive community. That part was fricking fantastic, and I hope that message dominates the film. I am also glad the movie is covering police mistreatment of autistic people.

And even though I was too upset by all the above to speak during Q and A, autism researcher Dr. Deb Karhson was there—and she asked the authors about how they managed to get access to Asperger's papers when Silberman was asking for them at the same time yet was rebuffed. John Donvan then admitted, for the first time in public, as far as I know, that yes, they did enter into an exclusive agreement with researcher Herwig Czech (who then stonewalled Silberman). Which puts Zucker and Donvan's past behavior—allowing Silberman to be publicly criticized for championing Asperger in NeuroTribes, after In a Different Key was released with publicity emphasizing "the real Asperger story" of complicity in Nazi murders of disabled children—in a very sketchy light.

Anyhow. They suck and I knew that. But now I have more details? Here is my live-tweeted coverage:



























10.01.2018

In A Different Key: Not The Autism Book You're Looking For (Live-Tweeted Review)

Content note for abuse and murder of autistic people.

I live-tweeted my reading of John Donvan's and Caren Zucker's "The Story of Autism" book In A Different Key when it was first published in early 2016. As the Storify platform my live-tweet compilation was originally published at has since gone under, I am republishing it here.

Verdict: Though well-intended and containing some interesting points, In a Different Key lacks empathy for autistic people themselves—even justifying parents murdering their autistic children. It also contains sloppy factual errors. Details in tweets/RTs below.

For other perspectives on the book, see relevant writings and reviews, also from 2016:
Note that in the interim, additional information has emerged about the details of Hans Asperger's work with the Nazi regime, and also also the regarding how researcher Herman Czech specifically kept this information away from NeuroTribes author Steve Silberman despite repeated requests, yet shared it with Donvan and Zucker during the two books' parallel writing period. For details, see Silberman's "conversation across neurologies" with Max Sparrow, on "how competition for priority can distort the process of excavating history."

Live-Tweets (From 140-character-era Twitter)



  • Live-tweeting my read of new book #InADifferentKey, from my perspective as a parent of a 1:1 #autistic teen, and a #neurodiversity supporter.


  • Tone of #InADifferentKey from page one: focus on “forms” of #autism, rather than very real, unifying #autistic commonalities. #NotHelpful
  • Also #InADifferentKey page 1: Parents fatalistic over not being able to “give” their child speech. Communication=more than speech. #autism
  • Parents need to hear that all communication is valid. Focusing on speech when other options available = damaging.. #InADifferentKey #autism
  • Focusing on the audience crying when an #autistic girl “awkwardly” hugs Katy Perry is inspiration porn. #InADifferentKey #autism
  • Parent voices = most “constant presence” in #autism history only b/c #autistic adults = unrecognized for most of 20th cent. #InADifferentKey
  • Donald Triplett’s #autistic perception of the world is characterized as “inflexibility,” rather than his reality. #InADifferentKey #autism
  • Stop bemoaning that #autistic kids don’t show affection like non-autistic kids. How about focusing on how they DO? #InADifferentKey #autism
  • Leaning against one’s parent if eye contact & touch are extremely aversive is an *extraordinary* show of affection. #InADifferentKey #autism
  • Of course it’s hard for non-autistic parents, if they don’t understand #autistic kids may express love differently. #InADifferentKey #autism
  • Glad clinical roots of terms like “idiot” are discussed — hopefully will help folks understand objections to usage. #InADifferentKey #autism
  • Social shaming prevented parents of kids w/disabilities from talking to each other, forming community, for decades. #InADifferentKey #autism
  • Professional shaming dehumanized kids w/disabilities as “burdens,” families were *always* told to institutionalize. #InADifferentKey #autism
  • Prev. eras: Parents were told it wasn’t “fair” to them, “normal” siblings to raise kids w/disabilities at home. :( #InADifferentKey #autism
    Sun, Jan 17 2016 02:01:21
  • Donald Triplett’s preference for things over people makes #autistic sense — people are unpredictable, thus scary. #InADifferentKey #autism
  • Kanner recognized that, even when he began identifying kids as #autistic, “[#autism] was there before.” #InADifferentKey #autism
  • Retro-diagnosing historical figures as probably #autistic is not a new thing; happened during Kanner’s era, too. #InADifferentKey #autism
  • Autistic developmental trajectories differ from “typical” ones, but Triplett exemplifies how development continues. #InADifferentKey #autism
  • Donald Triplett isn’t “proof that some leave the most debilitating aspects of #autism behind," but proof of #neurodiversity #InADifferentKey
  • #InADifferentKey’s phrasings perpetuate bias: D. Triplett is declared "a strange kid," rather than *perceived* as strange by others. #autism
  • Later, however, Triplett described as “strangest-seeming” kid. Much better, making difference about perception. #InADifferentKey #autism
  • “It was a challenge to be friends with Donald [Triplett].” Well, not all #Autistic kids seek or desire friendship. #InADifferentKey autism
  • Eventually, Donald Triplett had acceptance of his family, & allies who fought off bullies at high school. Good. #InADifferentKey #autism
  • Donald Triplett’s visibility & inclusion lead to eventual community acceptance. We need more of that, even today. #InADifferentKey #autism
  • The horrifying cruelty of the “Refrigerator Mother” label cannot be (re)emphasized enough, as #InADifferentKey recognizes. #autism
  • Long-standing negative media bias: @TIME covered #autism only after Kanner switched f/Inborn to Refrigerator Mother origin. #InADifferentKey
  • I would have been broken by the Refrigerator Mother #autism professionals, had my son and I lived in that era. Devastating. #InADifferentKey
  • Rimland discovered most “refrigerator mothers” had non-autistic as well as #autistic kids -- theory wasn't evidence-based. #InADifferentKey
  • Again with #InADifferentKey terminology. “Head bangers” are 80s/90s rockers. Otherwise, head banging is what a person does, not an identity.
  • “Tragic tendency of #autism advocacy groups” to turn on each other. No—Infighting b/t passionate folk happens w/ALL groups. #InADifferentKey
    Tues, Jan 19 2016 10:44:11
  • Many horrors against #autistic people included #InADifferentKey; worst so far: authors implying Dougie Gibson’s murder was a “mercy killing"
  • [image: Photo from the page of In A Different Key in which
    Dougie Gibson's murder is called a "mercy killing."]
  • It should never ever EVER be implied that killing an innocent #autistic person is a desperate parent’s only choice. #InADifferentKey #autism
  • "Desperate parents driven to murder” is one of the most dangerous, pernicious autism myths. There are always other choices. #InADifferentKey
  • #Autistic kids & families need & deserve support. But should NEVER be implied that, sans supports, murder = understandable. #InADifferentKey
  • Dougie Gibson was a murder victim. Yet #InADifferentKey dwells on and sympathizes with the story of the father who killed him. #autism
  • BTW, you know who also wrote about lack of supports justifying parents’ murder of their #autistic kids? Andrew Wakefield. #InADifferentKey
  • Dougie Gibson’s father convicted of murder, accd’ing to #InADifferentKey, only b/c jury didn’t get how hard “severe” #autism is—on parents.
  • Other #autism parents recognized the despair of Dougie Gibson’s father, argues #InADifferentKey, in defense of murdering #autistic children.
  • Which is worse: The systematic horrors of state institutions for #autism etc, or public’s systematic amnesia about them? #InADifferentKey
  • While #InADifferentKey constantly describes #autism as extreme hardship for parents, it pays little attention to #autistic kids themselves.
  • Seems like #InADifferentKey could at least consider the misery of an #autistic child who is constantly being misunderstood and unaccommodated.
  • In what universe is it OK or amusing to lock a non-speaking #autistic child in a room with an IRS agent to escape an audit? #InADifferentKey
  • #InADifferentKey is frustrating: The history of how #autistic kids became visible and educated matters. But so does honoring their humanity.
  • Distressed to think of the Archie Castos we’ll never know about; all the #autistic folk institutionalized, then forgotten. #InADifferentKey
  • It’s depressing, all the ways people have tried to force #autistic kids to talk: LSD, shock treatments, beatings. #InADifferentKey #autism
  • The 12-inch cattle prod that Lovaas used on #autistic children entrusted to his care at UCLA delivered 1,400 volts. #InADifferentKey #autism
  • Lovaas’s cattle prod felt like “having a tooth drilled by a dentist who had run out of Novocain” Those poor #autistic kids. #InADifferentKey
  • (I took classes at the UCLA Neuropsychiatric institute — where Lovaas worked — as a student in the late '80s. Am nauseated.)
  • When #autistic children are self-injurious, usually a good reason, like illness/sensory. Yet #InADifferentKey characterizes as “behavior.”
  • It may take time/sleuthing to find out why a kid is self-injurious, but the cause is rarely merely “being #autistic.” cc: #InADifferentKey
  • Even tho not understood in Lovaas's time, would be helpful to let readers know #autistic “stimming” helps self-regulation. #InADifferentKey
  • “Lovaas achieved similar mastery of the self-destructiveness of two other children,” i.e., he abused them into submission. #InADifferentKey
  • #InADifferentKey is frank about Lovaas’s abuses of #autistic children, but doesn’t exactly condemn them, either, not when they “worked."
  • Did not realize that Rimland essentially pimped/proselytized for Lovaas, in recruiting parents for ABA. #InADifferentKey
  • Interested to hear about the background and development of the TEACCH method. Somewhat like ABA, sans cattle prods. #InADifferentKey #autism
  • TEACCH methods are still widely used to educate #autistic students—in fact, it’s the method my son’s school employs. #InADifferentKey
  • Oh FFS. Families do not “deal with #autism.” That is no way to describe parenting ANY child, in need of support, or not. #InADifferentKey
  • When Lovaas had his second heyday in the '80s, he was careful to avoid “cure,” used euphemism “recovered” instead. #InADifferentKey #autism
  • You want to talk gnarly infighting? How about the extended, public, litigious Schopler (TEACCH)/Lovaas (ABA) brawl? #InADifferent #autism
  • “Schopler believed Lovaas had played [..] with the scientific truth, & that people would get hurt…” A valid fear indeed. #InADifferentKey
  • Things ABA proponents tend not to mention: Lovaas’s own results were unreplicated, therefore scientifically questionable. #InADifferentKey
  • #InADifferentKey describes support for Lovaas/ABA methods stagnating— until catalyzed by the publication of Let Me Hear Your Voice. #autism
  • Recently told a friend in Ghana that US didn’t guarantee special education until the IDEA passed in 1990. She was aghast. #InADifferentKey
  • Past US researchers tended to see #autism as an emergency, British researchers tended to want to understand it. Still true. #InADifferentKey
  • Briton Sybil Elgar’s early 1960s insight: “Visual processing tends to trump auditory processing in some kids with #autism.” #InADifferentKey
  • First official UK #autism prevalence rate of 4.5/10,000 was completely arbitrary, by researcher Lotter’s own admission. #InADifferentKey
  • .@utafrith’s early research w/#autistic kids confirmed that, for many, visual processing trumped auditory. #InADifferentKey
  • Genetics, & the possibility of their influencing cognition/development, was a psychiatry taboo mid-20th century. #autism #InADifferentKey
  • Genetics matter in #autism. This has been clear since Rutter's & Holstein’s 1974 UK twin studies. #InADifferentKey
  • When @sbaroncohen first ran Sally-Ann Theory of Mind tests, not every #autistic kid failed. 15% didn’t, in fact. #InADifferentKey #autism
  • Again #InADifferentKey dehumanizes: Lorna Wing unique among researchers in going "home to #autism at night,” rather than home to her child.
  • Why is #InADifferentKey so sympathetic to Lorna Wing’s efforts to expand the #autism spectrum, yet so often hostile to those she included?
  • You can read Lorna Wing’s original paper "Asperger Syndrome: A Clinical Account" here:  http://www.mugsy.org/wing2.htm  #InADifferentKey #autism
  • Lorna Wing created “Asperger syndrome” not to differentiate #autistic people f/each other, but to get them needed supports. #InADifferentKey
  • #InADifferentKey’s bias against Hans Asperger, in featuring only mostly his negative statements re: the boys he treated, is iffy journalism.
  • Hans Asperger saw “complete agreement in some respects” between the kids he reported on, & those Leo Kanner’s saw. #InADifferentKey #autism
  • Seems odd for #InADifferentKey to insist Asperger only studied Asperger-y #autistic kids, when historical record shows otherwise. #autism
  • Wish #InADifferentKey would stop with “families dealing with" #autism or DD, say “families who try to support their #autistic kids” instead.
  • #InADifferentKey is correct that many families of #autistic kids actively fight acceptance, in actively try to find “real” child inside. :(
  • Irresponsible: #InADifferentKey focuses on desperation of parents to communicate w/#autistic kids when result is tragedy, ignores valid AAC.
  • Everyone can communicate. We need to find better support strategies, not belabor well-known communication failures. #InADifferentKey #autism
  • Many #autistic people can’t speak/react typically due to motor/processing difficulties. #InADifferentKey has yet to consider that (p. 371).
  • #InADifferentKey oversimplifies, cites “acrimony” between those who view #autism as tragedy, & those who view it as gift/identity. (1)
  • Complaints re: “#autism is a gift” = misinterpretations of #autistic folk demanding recognizing abilities *&* disabilities. #InADifferentKey
  • Was 2013 DSM #autism revision more contentious than previous—or was it merely 1st in which #autistic people participated? #InADifferentKey
  • #InADifferentKey doesn’t actually mention #autistic participation in 2013 DSM; only mentions #autism revision being particularly contentious
  • Was Asperger an #autism criteria “splitter,” not a “lumper” like Wing? Or did he merely defer to Kanner’s territorialism? #InADifferentKey
  • #InADifferentKey’s authors must now buy the entire internet a drink, due to invoking cancer analogies in discussing #autistic heterogeneity.
  • Apologies that it's taking me so long to live-tweet reading #InADifferentKey: 1) Life interrupts & 2) It’s painful to read, on many levels.
  • Kids like Dov Shestack are both chronically ill *and* #autistic. Co-occurring. Illness is not, as #InADifferentKey suggests, part of #autism.
  • #InADifferentKey readers: #autistic people do indeed have higher rates of co-occuring medical conditions. But #autism is *not* medical.
  • Yes, $$ can influence direction of #autism research, as #InADifferentKey notes. Hence need for skepticism, reliance on unbiased expertise.
  • Most non-scientists don’t have a clue about differentiating b/t good and questionable #autism science. Why so many get duped. #InADifferentKey
  • Pseudo- or misguided #autism science (ECT for “behaviors," epigenetic causation) look plausible to lay folk yet horrify ethical researchers.
  • Dehumanizing phrases to avoid, yet used in #InADifferentKey: “Living with #autism” when discussing parent rather than #autistic experiences.
  • Unsurprised to learn ‘90s era org Cure Autism Now had a veto-enabled parent-only science advisory board. #InADifferentKey #autism
  • Interesting to read about IMFAR/Int’l Meeting For #Autism Research roots as a joint CAN/NAAR curebie/biomed initiative, in #InADifferentKey.
  • If only books like #InADifferentKey could focus on *why* an #autistic person might smear poop, instead of framing as horrorshow for parents.
  • @SherriPizza lots of possible reasons:  http://www.thinkingautismguide.com/2016/01/when-autistic-kids-and-teens-are.html  & yes cleanup sucks. But focus on the act too often used to dehumanize person
  • @SherriPizza Different when people talk privately. Book broadcasts an #autistic kid’s misunderstood struggles as horror for parents only.
  • @SherriPizza It’s not that parents aren’t allowed to have feelings. It’s that #InADifferentKey is ~exclusively about parent perspectives.
  • @SherriPizza And yes, it can be desperately lonely as a parents. But books like #InADifferentKey make it worse, IMHO, by compounding stigma.
  • Good to see #InADifferentKey acknowledge (tho 3/4 thru): #autistic insights are lifelines for parents who struggle to understand their kids.
  • #InADifferentKey, like #NeuroTribes before it, has good info on backstory of Rain Man.
  • It’s not for #InADifferentKey’s non-#autistic authors to declare Dustin Hoffman’s #autism portrayal “flawless.” Ask #ActuallyAutistic folk.
  • Temple Grandin’s approval of Claire Danes’s portrayal of her, as told in #InADifferentKey? Now that matters. #ActuallyAutistic
  • Not in #InADifferentKey: Temple Grandin’s mother refused to institutionalize her bc saw institutions as journalist.  http://meaningoflife.tv/videos/32212 
  • Before Temple Grandin/late ‘80s, #actuallyautistic insights weren’t available to parents/public. #InADifferentKey Thankfully no longer true.
  • #Autism professionals have important roles, but there is no substitute for #actuallyautistic insights, in understanding #autistic people.
  • #InADifferentKey finally cites #autism understanding/compassion; but only as way to help Temple Grandin normalize, & not her #autistic QoL.
  • Ugh. Did not realize Gerson Saines acceptance speech for Temple Grandin Emmy catastrophized re: #autism epidemic myth. Sigh #InADifferentKey
  • Like #NeuroTribes, #InADifferentKey shows there is no #autism “epidemic,” only changes in diagnostic criteria, and diagnostic substitution.
  • As #InADifferentKey notes, #autism is under diagnosed in kids of color/low SES kids. But it is also missed in girls:  https://www.blogher.com/how-can-we-do-better-our-autistic-girls 
  • Yep, anti-vax/#autism parents’ Achilles' heel was always “lack of convincing scientific support for an unproven hypothesis” #InADifferentKey
  • Yep, curebie parents reject science, embrace possibly fatal #autism pseudoscience “treatments” like chelation. Horrifying. #InADifferentKey
  • Another argument against person-first language—or for closer editing: “When injecting children with #autism…” er, what? #InADifferentKey
  • Charming: Anti-science parents invited to top #autism research meetings at NIH, etc. boast re: jeering and being disruptive. #InADifferentKey
  • Disingenuous: #InADifferentKey cites RFK Jr’s "Deadly Immunity" Rolling Stone article, but not @Salon’s retraction:  http://www.salon.com/2011/01/16/dangerous_immunity/ 
  • OK, so #InADifferentKey mentions later that @Salon retracted RFK Jr’s Deadly Immunity article on thimerosal. Several chapters later.
  • @NeuroDiverseAU I’m disappointed, honestly. I already knew #InADifferentKey was anti-neurodiversity, but I didn’t expect sloppy reporting.
  • #InADifferentKey cites @DrPaulOffit profiting from invention of rotavirus vaccine, ignores years of labor to create it, with no $ guarantee.
  • Sloppy: #InADifferentKey cites anti-vax furor over @DrPaulOffit profiting from rotavirus vaccine; ignores 100Ks of lives vaccine has saved.
  • I understand #InADifferentKey is trying to tell a compelling story. But the story is strangely sympathetic to pseudoscience #autism beliefs.
  • Glad to see #InADifferentKey recognize @deerbrian’s crucial role & then-rare skepticism re: Andrew Wakefield, in taking that charlatan down.
  • For the unaware: Wakefield was in cahoots w/lawyers seeking #autism-vaccine causation evidence to sue MMR makers for damage #InADifferentKey
  • #InADifferentKey is correct: Wakefield’s conflicts of interest in trying to undermine public confidence in the MMR vaccine are *stupefying*.
  • More #InADifferentKey sloppiness: it’s the *oral* polio vaccine that very rarely causes polio—and it hasn’t been used in the US since 2000.
  • So it is irresponsible for #InADifferentKey to state that the polio vaccine sometimes causes polio, when the US's injected version does not.
  • Michelle Cedillo’s story *is* a tragic one. But yet again, #InADifferentKey evokes “misery" of #autism by describing “behaviors” not people.
  • #Autistic people w/high support/complex medical needs deserve extra effort to see their humanity, less pity. Pls take note, #InADifferentKey
  • The real tragedy for Michelle Cedillo & family was being misled by anti-vax truthers & carpetbaggers. She deserved better. #InADifferentKey
  • “Hippocrates Would Puke”: apt summary of Andrew Wakefield’s MMR hoax (& New York Daily News headline), per #InADifferentKey
  • Schools still force #autistic kids to listen to non-autistic kids complain about them as @alexplank did in #InADifferentKey. Needs to stop.
  • While #InADifferentKey notes “Aspies” like @alexplank work hard to “pass,” its authors work just as hard to dismiss #autistic commonalities.
  • Why is it #InADifferentKey authors cannot conceive that #autistic people of all abilities may have more in common than not? Bias or denial?
  • #InADifferentKey could ask: Why aren’t *all* kids taught a common social skills framework? Why the pressure on #autistic kids, zero on non-?
  • Major #InADifferentKey fail: In claiming #autistic self-advocates are parents’s adversaries, it shows ignorance of what neurodiversity *is*.
  • @TheFactFidget @thinkingautism ➜ that it pits self-advocating autistes against parents is sad. Much can be learnt. Kids = future s-advocates
  • No, #InADiffferentKey: The “Ransom Notes” campaign failed b/c it dehumanized #autistic ppl, not b/c ran “afoul" of neurodiversity movement.
  • Oh FFS: #InADifferentKey compares Jim Sinclair’s “Don’t Mourn For Us” to Bettleheim’s Refrigerator Mothers, as form of parent blaming. O RLY
  • Acc’ding to #InADifferentKey, non-parents like Jim Sinclair shouldn't speak for #autistic kids “disabled in the extreme.” Like my own son?
  • At least #InADifferentKey’s agenda is clear: Anyone who is mean to parents of #autistic kids is awful. Even #autistic people wanting rights.
  • #InADIfferentKey in a nutshell — Cattle prods, murder, dehumanization: Let's not rush to judgment! Hurt a parent's feels: YOU MONSTER!
  • What #InADifferentKey doesn’t get: High support 1:1 #autistic kids like my own son *need* self-advocates to fight for their rights/humanity.
  • …b/c if people buy into messages #InADifferentKey spreads, ppl are *less* likely to support my #autistic son’s rights & humanity, not more.
  • #InADifferentKEy dismissively describes #autistic #autism researcher/info nexus Michelle Dawson @autismcrisis as a “formal postal worker."
  • #InADifferentKey critiques & patronizes @aneeman for a “failure of empathy”: telling parents to seek humanity, not cures for #autistic kids.
  • Since @aneeman is proudly #autistic yet refuses to be a self-narrating zoo exhibit, #InADifferentKey decides he cannot empathize w/parents.
  • …which is news to me, as @aneeman has spent a lot of time w/my own high-support #autistic son, and they are buds. Pls note, #InADifferentKey
  • Pls also note, #InADifferentKey: I would take issue w/your "not #autistic enough/no empathy” character assassination of @aneeman regardless.
  • #InADifferentKey claims people avoided arguing w/ @aneeman publicly for fear of being seen as bigots. Or maybe b/c his arguments were sound?
  • @thinkingautism @aneeman For fear of being seen *accurately* as bigots. "I'm not ableist, but..."
  • Heaven forbid #InADifferentKey admit @aneeman is a skilled, informed policy wonk. Instead, his foes are too nice to fight w/#autistics? #FFS
  • #InADifferentKey's patronizing continues: “@autismspeaks gave [@aneeman] a pass to say what he wanted.” Like men “let” women have the vote?
  • #InADifferentKey is so worried about “high functioning” #autistic @aneeman representing #autism that it ignores his cross-disability agenda.
  • If #InADifferentKey actually paid attention to @autselfadvocacy work, it'd know @aneeman + team fight for #autistic people of ALL abilities.
  • #InADifferentKey assumes @aneeman knows nada of high support #autistic kids, yet is “mind blind” if doesn’t cow to IRL attack by curbie mom.
  • Asperger’s syndrome is not a “ticket onto the spectrum,” #InADifferentKey —Asperger himself recognized #autistic kids of all abilities.
  • Kanner’s defining the #autism label excluded Asperger-like folk who needed support, for decades: the tragedy #InADifferentKey ignores.
  • Correction: On p. 531, #InADifferentKey does mention @aneeman and Steven Kapp’s contributions to informing the #autism criteria in the DSM-5.
  • #InADifferentKey claims parental love is one element in the whole #autism “saga” that is “unquestionably pure.” Really? Ask Issy Stapleton.
  • Apparently #InADifferentKey authors have never heard of child abuse. Even as they document it.
  • Here’s hoping the story of Donald Triplett helps #InADifferentKey readers accept non-standard, #autistic developmental paths & milestones.
  • Donald Triplett led a good life due to family supports, $, & influence + community acceptance. Few #autistics are so lucky. #InADifferentKey
  • Correction, #InADifferentKey: iPad 2010 introduction made AAC more affordable & *accessible* to #autistic ppl w/communication support needs.
  • It’s not as though AAC didn’t exist before the iPad. My son uses a non-iPad device, as current iPad options insufficient. #inadifferentkey
  • The “Talking Typewriter” ERELS system was used to help #autistic kids communicate as early as 1965, for instance. Per #NeuroTribes.
  • If #InaDifferentKey's btwn eternal battle of autistics vs parents were true, I'd be at constant war w/myself... 
  • Finished #InADifferentKey. Verdict: This is not the #autism book you’re looking for. Not if you want to understand/support #autistic people.