The Chicago Sun-Times recently featured a Q&A puff piece about Jenny McCarthy and Autism One. It was the kind of outside-autism reporter's guileless autism misinformation-mongering we might have expected three years ago, but which has all but disappeared from mainstream media after Jenny's autism-vaccine oracle Dr. Andrew Wakefield lost his medical license due to his callous disregard for scientific ethics and rigor.
On Sunday, the Chicago Sun-Times published a fawning, credulous Q&A with Jenny McCarthy, who has been more responsible than anyone in the country for advancing the spurious idea that there’s a connection between vaccines and autism.
The comments got heated, as one might expect when expletive-armed pseudoscience true believers rage against evidence-wielding science supporters. Surprisingly, those commenters even included Ms. McCarthy. And Eileen Hall, author of a petition asking the Sun-Times to "Provide space for parents who support autism acceptance to respond" (ideally, the title should have said people, not parents).
The result is that Mr. Mnookin has temporarily disallowed further entries -- which is understandable, and he posted his rationale at the end of his original post. But what was unfortunate is that this happened before many folks and allies from the self-advocacy and neurodiversity community were able to join the discussion -- myself included. Here is what I would have written:
Thank you Seth, and Eileen. But we are arguing with self-appointed cult leaders. We're not going to get through to them -- Jenny McCarthy's entire industry and her followers' entire belief systems would collapse if they stopped telling the world that their children are broken, or that autism is an epidemic & disease. We can only work towards real change by positive role modeling, by including autistic people in autism conversations, and by trying to reach people before they fall for such dangerous misinformation.
One thing you can do to work towards real change? Buy a copy of Thinking Person's Guide to Autism, and share it with someone who needs it. Ask your library to stock a copy. Give a copy to your pediatrician, or your district's superintendent or special ed director. Use our mission statement to explain why. And remember that, as a Thinking Person, you are never alone when it comes to countering dangerous autism misinformation.
Iz, as you may be shocked to learn if you've been reading this blog since I was dithering over whether to put her in kindergarten or first grade, will be going to high school in the fall. HIGH SCHOOL. Which means avalanches of shock and denial on my part. What the hell, people? She is almost as tall as me, definitely more athletic and academic than I ever was, and -- based on superficial factors -- certainly more likely to leave a trail of broken hearts in her wake. If she wasn't so damn cheeky I'd be mired in appreciative rather than irritated disbelief at the marvelous being Seymour and I spawned.
But before she hits the big grades, she'll be graduating from eighth grade. Next month. There will be a ceremony. Which is apparently a much bigger deal than it was when I hurriedly tossed on my lone Jessica McClintock frock and sat blinking in the Anaheim sun, alternately taking Disc camera photos of my friends, and family -- including my brother Chet, who had just finished his first year at the USMA, looked very handsome in his uniform, and made all the girls squee. It was fun, but it was not a source of stress.
Things are different for Iz's peers, apparently. As Iz informed me yesterday, "all the girls" now get their hair professionally did for 8th grade grad. To which my reply was a parent-censored version of WTF. Really? Professional styling for thirteen year olds?
I don't have a problem with girls of any age occasionally getting their hair or nails done at a salon, as a treat. I do have a problem with kids expecting those services as their right, especially with entitled attitudes that include declaring, as Iz did, that it shouldn't be a big deal because it's "only 35 dollars." As if she had 35 dollars lying around. And not as if she asked what she could do to earn said $35 (though she did, later, after the top of my head blew off and she realized she needed to rethink her strategy). As if we hadn't had a conversation just the month before -- after one of her cousins offhandedly described a non-essential cost as being "only $50" and I almost fell over -- about the difference between understanding a good deal, and not understanding the value of goods and services or of currency itself.
It's not as though she doesn't know how to do her own hair -- she spends hours each day straightening and molding and manipulating her tresses, with mostly impressive results. And it's not as though she doesn't have a mother and friends and auntie-friends like Jennyalice and grandmothers who have Hair Skillz at her disposal. But for some reason, she seems to think her hair won't be "right" unless it's done the way her friends are getting it done.
I suppose I'm mostly dismayed with what I see as a continuous cultural shift away from self-reliance and towards dependence on professional services when it comes to self-care. But maybe this is just the way her generation will be? Maybe it's a California thing? Maybe a cultural thing?
She'll look great either way. But does a 13 year old girl really need professional hair styling? My gut tells me no. But I'm not living her life, I'm revisiting mine -- as someone who loved figuring out how to create Audrey Hepburn updos, What's New Pussycat straight red sheets, and Veronica Lake peekaboos all on my own. Am I expecting too much? Is this just what kids do these days?
With Leo, sometimes routine trumps all. I'm guessing that's why, after almost two years of me dipping naan in saag and handing it to him, he took over the damn saag-dipping himself.
And now our boy eats spinach voluntarily, just as he does his daily dose of cod liver oil. And his diet is a rounder arena than it once was. Now we just need to help our boy with some of his own roundness. He's got that pre-adolescent lingering chub thing going on. Cute, but just on the cusp of unhealthy, according to his pediatrician, with whom he had his annual exam two weeks ago.
I prescribe: More hiking! Hiking season resumed just two weeks ago:
We've had weird wet spring after a rather arid winter. It's been heaven for Seymour the mushroom forager -- his secret porcini & chanterelle spots are still productive -- but local trails are only now non-mucky. Apparently local drivers' skills are changeable as well, as this is what the entire side of our parked-on-the-street car looked like when we emerged from the oaken hillside:
I'm driving a rental while my car's entire driver's side exterior gets replaced. Mali was less concerned about our car itself than transferring her library copy of Harry Potter and the Half-Blood Prince to the new car's CD player. Leo doesn't seem to mind driving in a different car. And I'm intrigued by this thing called "XM Radio" which lets one have single-theme channels like "Crappiest 80s Tunes." I can now blast fetid Rick Astley or painfully monotonous Nu Shooz at Iz if she and her friends try to use their iPods to flood the car interior with shallow shiny One Direction tunes.
Off to the annual school district fundraiser. I am tired. Hope you are well.
Iz is just finishing up her OWL (Our Whole Lives) sex ed class at our Unitarian church. She's been going for three hours every Sunday evening for several months. They've covered a wide range of topics, from dating to gender identity to STDs to reproduction to sexual identity (including a PFLAG presentation), and plenty of frank, frank talk.
I very much wish I'd had access to this kind of clear, non-judgmental information sharing when I was thirteen, and then spent time in an open and accepting Q&A arena. Wasn't going to happen in a Catholic RE class in 1983, no sir. But how many of us could have benefited from last week's exercise & discussion, I wonder? From the charming Derby, our UUFRC Director of Religious Education:
Tonight was all about sexually transmitted infections (STIs). We
started with a condom obstacle course, which is designed to counter
myths about condom use. The teens try condoms on their hands and see
what they can feel through the condom (e.g., a feather) to counter the
"I can't feel anything" myth. They stretch and measure (and in some
cases, blow up like balloons) condoms to counter the "I'm too big"
myth. Using wooden penis models, they practice putting on a condom
correctly and see how quickly they can do so to counter the "it's too
complicated" and "it will take too long" myths. This is widely regarded
as the most popular activity of the entire OWL class.
We followed the obstacle course with an activity that
demonstrated
transmission of STIs by exchanging M&Ms with various partners
(different colors representing different STIs or no consequence). Next
was a summary of several STIs (symptoms, permanent harm caused, cure,
vaccine, transmission, and prevalence in the U.S. population). We
followed that with a myth or fact game. Last, we had an activity in
which the youth were asked to give advice to teens who had had sexual
intercourse and were going to date someone new.
IKR?
One of the joys of last weekend was witnessing my godson's First Communion at a local Catholic church. I hadn't been face-to-face with a crucifix since my dad's funeral almost exactly five years ago, I realized. And while I still respect Jesus and his messages mightily, and found the routine of the Mass comforting, I have no regrets about my chosen UU spirituality -- especially regarding its guidelines and supports for our children.
And so sometimes your son's home program supervisor says, "but isn't there an even simpler app for making social stories and scripts, you know, like a comic strip?"
A ten-second iTunes search and voila: Comic Strip - CS! For only 99 cents, even!
The ice cream story above took less than five minutes to make on the iPad once we'd taken the pictures, as the interface is extremely simple and straightforward. The options aren't extensive, and I wish some of them were more flexible (scaling thought bubble and font size, flipping speech balloons), but hey -- the app cost 99 cents.
Mali was impressed as well. Here's her first effort:
Recommended, as long as your expectations are realistic, and especially if you have kids who can create and who might enjoy creating their own one-page comic strips.
Tell me the truth: What would your reaction be, if you encountered a kid like Leo endlessly pacing a playground structure as in the video below? If you didn't read this blog, or blogs like it; if you didn't have your own Leo, if you weren't a variation on Leo yourself? Would you back away awkwardly from the weird kid while scanning the perimeter for his adult? Would you tell your own children in an intentionally over-loud voice, "well, I don't know what he's doing so we'll wait until he's all done"?
Or would you relax into his joy, recognize it, accept that pacing a circuit is some kids' idea of The Very Best Fun?
I did not start out from a place of acceptance. As a disability
community outsider and a fairly non-intuitive person, I lacked the
context, experience, and insight to see past our society’s too-prevalent
autism stereotypes of pity and parental burdens. I never knew anyone
who identified as Autistic, never realized the full variation of the
autistic experience, never considered that autism did not have to
preclude Leo from living a full and happy life. Thankfully, the online
and offline worlds are alight with autism acceptance trail blazers —
autistics of course, professionals and parents too. They have not only
shown me the way, but shown me incredible patience along the way (I’m
not always the best listener). And I remain mindful that I still have
much to learn about autism, and that much of that learning will come
from Leo himself.
What we try to do in our book is help people learn to think critically and rationally about autism even when they are in the midst of this whirlwind of new information. So many parents are so distraught when they learn their child is diagnosed with autism. We want to help them through that. And we want to let them know that even though the media tends to perceive people with autism and special needs like this lightning bolt of ‘bad luck,’ people with special needs are part of our community. They’ve always been here. This is just another way of being. These people need more understanding. Yes! They need more support. Yes! But that doesn’t make them “other” or “less than.” These are families that need compassion and understanding, but not pity. We want to help people get past fear, myths and negative stereotypes.
The good folks at Babble Toddler Times wanted input about early intervention and autism (they also wanted advice for other paents to feature -- I suggested an autistic autism parent, but the logistics did not work out):
My advice is threefold: Find a pediatrician who takes your concerns seriously, find positive, evidence-based autism resources and role models (this is exactly why we created Thinking Person's Guide to Autism), and try to understand that your child's behavior is a form of communication. Our kids deserve to achieve their potential, but can easily get left behind if their unique needs are not properly identified and addressed early on. Autism experts can help us recognize where our kids need help — be it with communication, self-help, academics, or social skills — and the best strategies for supporting their needs.
Finally, we've had TPGA interviews for a ton of additional radio stations: KCBS-AM San Francisco, WSNJ-AM Philadelphia, WVNE-AM Boston, WYRQ-FM Minneapolis, WOND-AM Philadelphia, WQYK-FM Tampa, and four more coming. Mali and Leo heard the local interview with Jeff Bell; Mali was so impressed that she waited until the segment was over before demanding I put her Goblet of Fire audio book back on. Should you ever need to get the word out about a book, I hope you'll be fortunate enough to enlist the services of the phenomenal Media Masters Publicity -- we have them to thank for these radio spots!
There's a reason for the lack of posts lately: Writing and presentations and interviews elsewhere. A lot of them. Most in March because the entire TPGA team has been busy promoting the Thinking Person's Guide to Autism book -- but then last week the CDC issued a new report on increased autism prevalence, and yesterday was World Autism Awareness Day and the beginning of Autism Acceptance Month -- and the pace stepped up.
Interviews and guest posts since Thursday (and one upcoming), Every single one with Leo front and center in my mind, and I hope readers'/listeners' too:
At Parents Magazine, the lovely Ellen Seidman of Love That Max wrote: "April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers who have kids with autism." That will include other TPGA editors throughout April. Here's an excerpt from my guest post:
My autistic son Leo is curled up on the couch reading a new book: Planes, by Byron Barton. I’m sitting next to him, basking in the joy of a kid who adores those flying machines, glad the book is distracting him from some also-new canker sores. Leo’s kind of autism means he speaks mostly in requests, and can only tell me generalities about his pain: his mouth hurts, he wants me to make it stop. He is not able to tell me how intense the pain is or how long he’s had the sores, which makes my heart ache. It also means his treatment plan is going to require guesswork.
I’d need even more guesswork if Leo didn’t have a large, supportive online community of autistic adults and autism parents and professionals at his back: willing to share their experiences of being autistic and in similar pain, telling me what worked for them or their kids or their patients, offering approaches that help autistic people tolerate medical treatments. I am so grateful to the autistic adults who understand and relate to Leo, the autism parents who have been in my shoes, and especially to the parents who are themselves autistic and so have extra insight about how best to help my son. As long as we have wifi, our family will have 24/7 acceptance and support.
The good folks at Toca Boca asked if Leo could be their WAAD poster boy. Well, yeah! Leo's love of Toca Boca apps is well-documented. Excerpt:
Playing Toca Kitchen with Mali
during Iz's doctor appointment
My son Leo, like most kids, glows with an awesomeness that takes many forms: he’s a fierce bicycle rider, a fish-like swimmer, a walking happiness explosion, and an iPad fiend. He’s also autistic, which for him means speaking is difficult (though he hears just fine), learning is unpredictable, reading is hard, other people can be confusing, and even independent play can be overwhelming.
Having an iPad helps Leo through many challenges. It’s changed his life, and I don’t write that casually.
Siva of TechInSpecialEd, a site I like so much I recommended it in the NY Times, asked me and Jen Myers to host an Autism A-Z party for WAAD. The questions from the participants were really excellent, and it's always a treat to watch how quickly and intuitively Jen thinks on her feet. Here's a representative quote of mine, in response to a parent asking how we can help parents and relatives understand autistic kids:
Speaking of tech and special ed, I'll be participating in AssistiveWare's Autism Awareness Month activities, specifically giving a Webinar on Tuesday April 24, 2012 - 8:30 pm EDT/5:30 pm PDT to 9:30 pm EDT/6:30 pm PDT:
This webinar will discuss iPads and apps as dynamic and cost-effective
learning and leisure tools for people with autism. Ms Des Roches Rosa
will also highlight some of her (and her son's) favorite apps, and their
specific benefits.
I got slightly grumpy about the way some orgs celebrate Autism Awareness Month:
Many autism organizations are celebrating April as Autism Awareness Month. But others, especially those in which autistic people have a say, are celebrating Autism Acceptance Month instead. Why?
Because Autism Awareness doesn't really help autistic people in general, and kids like my son Leo specifically. It makes it too easy for well-meaning people to feel they are "doing something" about autism if they wear a blue ribbon or buy a blue light bulb -- when neither of those actions translate to real-world benefits and support for autistics and autism families. Autism Awareness campaigns let people look at Leo Bike Riderpictures of kids like my sweet Leo (riding his bike in the photo), and say "awww" or "bless his heart" while still considering him as a statistic, a number in an "epidemic" (autism is not a disease), a burden to society.
Because we consider April Autism Acceptance Month, Thinking Person's Guide to Autism will feature "Slice of Life" conversations with Autistics of all ages -- kids through adults -- for each of the month's remaining 29 days. We will profile a different autistic person every day, answering the same set of questions -- in a similar spirit to (although for copyright purposes otherwise unlike) the Proust questionnaire capping each issue of Vanity Fair magazine.
Why? We'd like to help our non-autistic readers get to know autistics as people who have interesting, complicated lives, and who are as diverse and varied as any other random population united by a label. We are the people in each others' neighborhoods, and the more we know about each other, the more visible we and our children are, the more common Autism Acceptance will be. That is our hope.
Steve Silberman's NeuroTribes post goes even further, asking people from the autism communities -- including all five TPGA book editors -- what they think actually needs to be done (and damn, it got BoingBoinged. I so very, very support what Steve wrote:
Obviously, even a month of acceptance will not be enough to dramatically improve the lives of people on the spectrum. What could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults – now, starting today?
Yesterday at ChildMind.org, Beth Arky interviewed several autism parents, many of whom are TPGA contributors, including me -- about how autistic children are not "going to magically stop needing support after they reach a certain chronological age."
Today's fifth World Autism Awareness Day kicks off a month perhaps best known for fund-raising walks and a flood of media coverage. But for parents whose children were among the first wave diagnosed with autism—as well as those with younger children who see the future fast approaching—the pressing issues have gone well beyond awareness.
These parents face the harsh reality that when their children—200,000 of them over the next five years, according to one estimate—reach 21 or 22, depending on the state, all the educational supports and services they have been receiving under the federal Individuals With Disabilities Education Act (IDEA) will vanish. This forced transition, called "aging out," pushes them into the woefully lacking system for disabled adults.
Katherine Stone wrote about the new autism prevalence numbers for Babble:
The CDC researchers believe the increase in autism in
children is due to better awareness and identification by parents,
communities and healthcare providers, and several experts have chimed in
to say that, as scary as the numbers sound, the increase could actually
be a good sign. It means that more kids who need them are being
connected to services and treatment.
[Rosa] said she wasn’t surprised at all, especially, “… given last year’s news about autism prevalence rates of 1 in 38 in South Korea.
If you look at the CDC’s report closely, you’ll see that rates vary
widely by region, and that part of the increase is due to missed
diagnoses among the Latino and African-American children. Underdiagnosis
and misdiagnosis among minority children is something folks like Holly Robinson Peete have been talking about since 2010.”
Once again, Seymour found out I was going to be on Forum because someone at work told him, not because I did.
The show, also on the new CDC rates and what they mean (more evidence that autism has been here all along and we're mostly just getting better at finding autistics) was primarily a three-way conversation between host Dave Iverson, me, and Dr. Sanford Newmark, head of the Pediatric Integrative Neurodevelopmental Program at UCSF. Dr. Newmark was a courteous and kind individual with whom I have much in common about autism and supporting autistic children -- but we differ markedly regarding helpful autism approaches.
It was an educational exercise in respectful disagreement and standing strong for autism science -- and I was very conscious of avoiding the Jenny McCarthy's "righteous parent" model of shouting down and ridiculing doctors with whom she does not agree. When I did not agree with Dr. Newmark, I tried to do so with respect, while citing the science, the scientists, and the studies.
You can listen below, would be interested in your opinion.
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Jen Myers and I also did interviews about TPGA for the Center for Autism's Skills Live yesterday, and I've done four radio interviews (KYW Philadelphia, WGTD & WJMR Milwaukee, and WBMX Boston) besides the KQED Forum one since Thursday, on TPGA, CDC rates, Autism Acceptance, you name it. Several more radio interviews coming up, will keep y'all posted.
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*pant pant* If I owe you email or money, this is why you haven't heard from me!
Glad someone in our house is getting exercise. Mali has been putting Leo's Star Wars action figures through their yoga paces, letting them join the usual class of pinnipeds, Littlest Pet Shop bobblers, and trucks.
I like the photo above because some of the oak tree branches look like wayward Mali curls. (Have been experimenting with various methods of taming those locks, advice always welcome.)
Always with the too-busy over here, which makes focusing on play and fun ever-more important. There's only one little kid left in our house now, moments like these need to be celebrated and savored.
Lorna D'Entremont of Special Needs Book Review just published an interview with me, in which we talked about Thinking Person's Guide to Autism, the fabulous team of editors who made TPGA happen, autism, pseudoscience, parenting, and more. One excerpt below, but you should read the whole thing. Lorna asks great questions!
Lorna: One of the essays you wrote for Thinking Person’s Guide to Autism is Identifying and Avoiding Autism Cults. You said, “The best investment you can make in your autistic child’s future is a commitment to intense scrutiny of treatment options.” Would you elaborate?
Shannon Des Roches Rosa >> Unfortunately, there are people who
view autism as a cash cow, and want to milk every dollar they can out of
worried parents who want definite answers or guarantees or cures. Other
people — generally but not always parents — embrace that same autism
misinformation, and fight for it with all the righteousness and zeal of
true believers or cult members. If you don’t learn to think critically,
and evaluate autism information using rational criteria, then you might
fall for the charlatans’ guarantees or surrender to the believers’
enticing groupthink and exhilarating rage. And those two paths hurt
autistic people — they misdirect resources and energy, they promote
horribly disrespectful attitudes that autistics are damaged or broken
unless “cured” or “recovered,” and they can cause physical harm through
gray-area and unsubstantiated medical treatments like chelation or
Valtrex.
I don't know if you saw yesterday's horrible, tragic news about the Sunnnyvale mother who killed her 22 year old autistic son and then herself. It's awful. It should never have happened. It is never OK to kill a child, there are no excuses for doing so, not even the caregiver fatigue and desperation that every news story I've read is citing.
However, as the media insists on covering this solely as an issue of autism and caregiver fatigue, I will address that issue as well -- and say that there was a lot more than autism and caregiver isolation going on. They were a family that needed more support than they were getting.
I'm sure the details will come out in the media eventually. What you need to know now -- whether you're part of the autism communities or not -- is that the family did not have enough options when their son transitioned out of school -- Leo's school, as it happens, where every last member of the community is devastated and reeling. Where the son was a cherished student for many years.
The son was welcome to transition to Leo's school's adult program, but, as reported in the news, his mother didn't feel it was the right option for him. However she was also not able to find other options. And that, the media is insisting, was likely a catalyst in an already unstable situation.
We need to find better options for young adults with autism and developmental disabilities as they transition out of school and into .... where? We need structure, options, policy ... and to ensure that all our kids have options when their yellow school buses stop showing up.
Ironically, yesterday was a banner day on the internet for discussing school to adulthood transition options. I recommend reading the following articles (three from yesterday, one from a couple of weeks ago) and then let's talk about what the hell we can DO to support all our kids in the transition to their own version of successful adulthood:
