4.03.2012

All About Autism Acceptance Month & CDC Autism Rates

Photo © Thai Chu
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:

Parents Magazine: Parenting Autism: In The iPad And Internet Era

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.
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Toca Boca: A World Autism Awareness Day guest post by the amazing Shannon Rosa

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.
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TechInSpecialEd: Autism A-Z With the editors/authors of The Thinking Person's Guide to Autism, on Tech in Special Ed


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:
I think it's really important for people to understand that our kids aren't being bad. It's important to understand that they're behaving atypically for good reasons, to understand those reasons: http://thinkingautismguide.blogspot.com/2011/08/i-want-to-tell-you-secret-about-autism.html
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AssistiveWare: Autism Awareness Month

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.
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On BlogHer: April as Autism Acceptance Month

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.
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Thinking Person's Guide to Autism: Autism Acceptance Month, Profiling Autistic People
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.
The first two profiles, of ten-year-old Aisling and twelve-year-old Monkey, are must-reads.

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NeuroTribes: Autism Awareness is Not Enough: Here’s How to Change the World

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?

That’s the question I posed to a group of self-advocates, parents, and teachers that included Nick Walker, an autistic aikido master who founded his own dojo in Berkeley; the first openly autistic White House appointee, Ari Ne’eman; Emily Willingham, one of the sharpest science writers in the blogosphere; Lydia Brown, a prolifically articulate and thoughtful 18-year-old self-advocate at Georgetown University; Todd Drezner, director of Loving Lampposts, a groundbreaking documentary on autism and neurodiversity from a father’s perspective; and the editors of Thinking Person’s Guide to Autism, which is my personal recommendation for parents to read after their son or daughter’s diagnosis.
Steve was also interviewd by Jonah Lehrer for Wired today about autism and Thinking Smarter About People Who Think Differently. Thank you, Steve for caring -- and thinking, and researching -- so deeply.

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ChildMind.org: Aging Out: When Kids With Autism Grow Up

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.
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And then to the CDC autism rates.

Babble: Moms Respond As CDC Says Autism In Children Up A Whopping 78%

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.
She asked for my input, cited below, and paraphrased at The Week:
[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.”
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KQED Forum: Autism Rates on the Rise

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!

3 comments:

  1. LOVE this round-up. Great work! Things I missed and must really read.

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  2. whoa! i'm having to schedule time to read this, can't imagine how crazy busy you've been writing it. I don't write a blog, but awareness month has made me busier also. People are asking me questions, sending me emails, wanting to know more. This awareness campaign is working. The more I talk about it the less intimidated people are to ask me about it. :)

    ReplyDelete
  3. So glad people are asking questions and that you're there to answer them!

    ReplyDelete

Respectful disagreement encouraged.

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