Parents should be afraid of deadly diseases, not autism. Autistic people have always been here (and they deserve to be vaccinated, too). But because of media-generated misinformation and outright hoaxes, some people still believe, wrongly, that autism is a vaccine injury -- despite landslides of evidence to the contrary. We need to fine-tune our advocacy efforts to reach such folks using facts, understanding, and compassion. I know those efforts can work, because they worked with me.
Like many people, you may not know much about autism, and may not know
what to say to someone who wants to talk about autism in a conversation
about immunization. You might worry that you will say something to offend or hurt autistic people and their families -- but you don't have to feel that way.
Please join us on Friday, July 11 at noon EDT (9 am Pacific) for a very
important discussion with Shannon Des Roches Rosa. She will share what
she has learned from autistic people and their families, including what
they have taught her about neurodiversity and what they want you to know
about autism.
Shannon Des Roches Rosa is an author and an
outspoken advocate for neurodiversity who writes at her Squidalicious
blog, is a contributing editor at BlogHer, and is a co-founder and
senior editor of The Thinking Person's Guide to Autism. She has been
published widely online and in print.
If you can't make the call, you can still educate yourself about autism and vaccines, with the articles on my Vaccines and Autism Pinterest page (and that should tell you how invested I am -- I made a damn Pinterest page).
Hope to hear from/chat with you tomorrow!
One healthy, fully vaccinated autistic dude. [Image description: young man with beige skin
and short curly brown hair, wearing a turquoise tee and red shorts*,
standing in front of a low light gray cinder block wall upon which "life
is good" is graffitied.]
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!
Here's Leo performing Shoo Fly at yesterday's variety show at his school, which featured performances from the littlest students to members of the adult program (Leo and many of his peers will probably stay at the school ... forever).
Leo was awesome, don't you think? It's worth noting that he can sing much, much longer sequences than he can string together conversationally -- I've been wondering for just about ever if there's a way to use the former to build on the latter. Ideas?
Leo's sisters and three cousins were able to watch his performance, and they were very proud of him too, as was Jennyalice (whose Jake was the cutest bumblebee ever).
My favorite moment of the show was when one of the show's star teen performers came and sat next to Iz and her equally suddenly leggy cousins. He was quite charming. "I'm happy!," he told them, then "I'm hungry. Are you hungry?" The girls admitted that they were, and that was the extent of the conversation, and cheerfulness continued to reign. No one ever mentioned anything odd about the exchange -- they said afterward that they thought he was really nice. Chalk one up for autism acceptance as a matter of course -- as nothing worth mentioning, even. Except for by this ever-vigilant and very proud -- in more ways than one -- mother.
Last week I was invited to join a group interview with autism activist and author Holly Robinson Peete, to talk about her beautiful, touching new children's book on autism, My Brother Charlie.
I was thrilled to join the chat, because My Brother Charlie is a book that needs talking about. It's a book our community has needed for a long, long time, and one that will hopefully give other people -- and their impressionable, open-minded children -- insights not only into what autism is like, but how truly special and loved people with autism can be.
Holly wrote My Brother Charlie with her daughter Ryan, whose twin brother RJ, has autism. Long time readers know that I am an advocate for literary activism, so I appreciated talking with Holly about her book that not only promotes autism acceptance, but donates a portion of its proceeds (to the HollyRod4Kids Foundation, to help kids like RJ and Leelo).
Holly has serious plans for My Brother Charlie:
"...our biggest goal is to make sure that you know when you walk into a classroom, not only do you see the “No, David!” books, but you see “My Brother Charlie” sitting right next to it. And I think you know that’s going to be a difficult path, but I think we can get there."
It was an hour long, eye-opening, and cherished conversation, I wish I could share it all but that post would be far too long. (Plus we were sworn to secrecy on a couple of points.) The other interview participants were:
Melanie asked about the book's role in helping families whose kids may have autism:
HRP: It is our hope that when families are able to read this book and in the back of their minds know there’s something going on, that they read [My Brother Charlie], it will give them hope and a little less fear to talk about autism and what may be happening with their families. So I hope that it will help get people out of denial.
Melanie asked what "aunties" and friends can do to help kids with special needs and their parents:
HRP: Just take those kids and give the family a night out. That is the biggest thing, that is so underrated. When an auntie says you know what, I’m going to take your kids to the movies or they’re going to come to my house or I’m coming to your house; you and your husband go out, or just you go out if you’re a single mom.
Childcare is huge, because so many of us with special needs kids are very uncomfortable leaving our children with just anybody. And an auntie is a perfect person that can give us peace of mind. We can go out. We can just have some me time, because that’s what parents need.
I asked how much input her co-author and daughter Ryan had, and how Ryan brought her experience to the process:
HRP: Well, it was all Ryan. She came home one day from school and said the kids do not understand what RJ’s going through. And she said, "It’s really sad. I watch him, he’s not connecting with the other guys. They think he’s kind of a jerk because he doesn’t say 'hi' to them as soon as he’s spoken to."
And she said, "You know, I think they don’t understand what autism is and I think we need to come down to school as a family and have this conversation," so that’s exactly what we did. We went down to a fourth grade class. My husband’s played in Super Bowls, I’ve spoken in front of lots of people, but nothing was scarier than sitting in front of fifty fourth-graders, just having this conversation.
But basically, we said to them, "Autism is something that makes your brain a little bit different, but it doesn't mean that you don't need friends, that you don’t need people to understand who you are." And then we talked about strengths and weaknesses. We asked them what theirs were, and one kid said I’m great at soccer, but I suck at math. And another kid said I’m great at math, but I’m terrible at football."
And then we said, "Well, our kid can tell you the name of every single American President, one to 44, if you just give him a number. He can tell you the name of every single player in the Major League Baseball; every single umpire’s name, practically. He is a wiz in sports; if you just ask him these questions he can tell you that; however, he’s terrible at making friends." It made such a difference.
So that was really the basis of the book. We though, "If we talk about how Charlie has these strengths and then focus on the things he can do great, then I think that’ll take the scariness away from autism and promote autism acceptance."
But it was all Ryan and she had a lot to do with making this book. The two of us, we sat down, we talked about our goals and our objectives, and we wanted to make sure that we were able to connect with children and help them understand what autism is and help them be more accepting of it.
Ramesh talked about how his daughter with autism read My Brother Charlie and said, "This boy is just like me."
HRP: Oh, wow. Oh, my God -- that gives me the chills. That was what we wanted to do. We wanted kids to be able to identify with these children and see themselves portrayed as, I don’t want to say heroes, but as the protagonist in a mainstream book.
Ramesh then asked how long it took Holly and her family to publicly acknowledge that RJ has autism:
HRP: We took a long time. It took us about six years to be able to talk about it publicly. It was a difficult conversation for our family. My husband didn’t want to pull [RJ] out as the poster child for autism. We were concerned about how labeling him in the media might affect him.
We didn’t keep [RJ's autism] a secret, our family circle knew and people knew, but we didn’t make a big deal out of it. But really, it was something random that made us decide that [public acknowledgment] was something we needed to do. We were out at an amusement park and a family walked up to us and said, "we know who you are and we had heard through the grapevine, and thank you so much for talking about it because it’s really helped us." And we realized that if we talked about it even more that we might be able to effect change.
Ramesh also asked how RJ was taking the publication of My Brother Charlie:
HRP: The perfect example is, we were in Philadelphia at an amazing museum called Please Touch Museum a couple weeks ago. And we shut down the whole place for just families and their kids with autism. And it was so amazing and families didn’t have to worry about their children touching things. They could just be free.
We read the book and at one point a kid walked up to RJ and said hey, Charlie, and started calling him Charlie. And [RJ] said, “I’m not Charlie, I’m RJ, but Charlie’s a cool kid, isn’t he?” And so he really does get that he’s helping to put this message forward. He’s almost 13 and I’m loving that he really does get how important this is to have this conversation.
Because basically, he became a rock star in his classroom after we started talking about his strengths and kids started looking beyond his weaknesses. And I think all it takes is just to have more conversations like that.
I asked if her family had ever encountered people who treated RJ with less than compassion, and asked what she has done in those situations:
HRP: Well, of course we have. Every single parent who has a child over the age of three or four, certainly school age that is on the spectrum has experienced some, whether it’s at school or whether you’re in the supermarket and your kid goes flat on his back in the aisle and someone walks past you and either verbalizes or gives you that look like why can’t you control your kid?
So we’ve all experienced that and I certainly have, especially on airplanes. That’s always fun, the airplanes, because he’s so much better now, but boy, when he was three, four, and five, his favorite thing was to keep pushing the call button for the flight attendant. And if he couldn’t do it, he would kick the seat in front of him, so it was one or the other. And so (we used) to have to try to disable the call button. People got so angry and really just you know you know how people are on planes with just typical kids. So this was rough.
And I usually try to say to people you know what? He has autism and I just want to tell you that that makes it so he cannot help his behavior. So I can’t yell at him or spank his butt to make him stop. So you just rely on the basic compassion of other human beings. And oftentimes that’s not enough. But I feel like I can educate people one person at a time and hope that there’s an each-one-reach-one mentality that happens.
But that’s one of the reasons why we did write the book. We really, really wanted to get this word out about autism being not so scary.
HRP wanted to add that she's been getting some feedback saying that this is a book about a boy who makes progress, people saying that not all kids with autism will do that:
HRP: [RJ's] made a lot of progress, yes; and we’re blessed because we were told he wouldn’t be verbal and we were told he wouldn't do a lot of things. There’s a moment in “My Brother Charlie” where [Charlie] says I love you and many families will never hear their daughter or son say that. I do think about them and we spend a lot of time with teenagers that basically use machines to talk and I’ve found them to be amazing people, so just giving a shout out to those families as well.
Jennifer asked what was it like working with Ryan on the book:
HRP: It was a tremendous bonding experience for my daughter and myself. We had the best time and she’s so proud. It’s very interesting watching her blossom into this amazing writer and this really great sister. I mean she’s this unbelievable advocate for her brother. And now she’s going to start blogging and having chat rooms with other siblings.
And you know I talked earlier about how we went to the Please Touch Museum with all those families with autism, and they were calling RJ Charlie and he was eating it up? But with Ryan, sisters and brothers were walking up and going guess what? I’m a twin sister and my brother has autism, too. I mean they were proud of it and to connect with another young lady who’s experiencing and verbalizing what they go through.
You don’t hear enough about what siblings have to deal with; ruined play dates, vacations cut short, terrible airplane flights, you can’t stay in the movies or restaurants too long. And these things can take their toll on siblings and I have spoken to many adult siblings of children with special needs and they’ve experienced that, too.
So writing with her was amazing, but I have to say the best part is now, seeing the connection and how people are responding to the book and being very comfortable with approaching her, and her just getting that she’s doing a service.
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I'll leave you with Leelo's little sister Mali's review of My Brother Charlie:
Holly is graciously offering an autographed copy of My Brother Charlie to my readers. To join the book-seeking fray, please visit my review site.
Photo of RJ, Ryan, and Holly Robinson Peete (c) Chris Voelker, VoelkerStudio.com
