Must-Watch Autism Videos

Here is my current autism video queue. This queue should be your queue, too.

The IACC [InterAgency Autism Coordinating Committee] Full Committee Meeting April 11, 2011. This is a long, long video -- but it's broken up into easily-accessed sections if you view the video through the site. My favorite part so far is Lindsey Nebeker's public comments on safety and the need for support for people with autism like her, but especially for people like her younger brother James, who also has autism but whose needs are more "severe," who lives in a group home, and who will become her legal responsibility when her parents pass away.

The MacNeil AutismNow series is this week's most prominent must-see. Though the madness of spring break means I have yet to see them, their viewing is next on my list (after sleeping, helping Leo sleep too, and wishing fervently for our cheerful but unsettled-stomach son to go 24 hours without projectile vomiting).

Distressingly, feedback from trusted sources is not great. Seth Mnookin called the series "An embarrassing, reckless, and irresponsible coda to Robert MacNeil’s career," as MacNeil let his daughter Alison state, on camera, that "Paul Offit and former CDC director Julie Gerberding 'have lost touch with their humanity. ...I don’t know how either of them manage their guilt and complicity in hurting so many babies.'"ASAN, the Autistic Self-Advocacy Network, is concerned that MacNeil "Leaves Out Key Stakeholders, Relies on Old Stereotypes." Dr. Vincent Iannelli at About.Com Pediatrics worries that "we don't need another show to falsely increase fears of vaccination."

I suspect that the series is made from the perspective of a worried grandfather with a less-than-deep understanding of and experience with autism, whose emotional investment knocked his reporting gears out of balance. If my parents had made a documentary about autism when Leo was little, it would have had a similar tone -- especially if they had filtered it through my then-beliefs about vaccine causation.

Since the series is in the bag, I hope that MacNeil does a follow up in a year or two, after he's talked with adults with autism and -- well -- families like ours, who put respect and love for our kids before their labels and challenges. No one can deny our kids need support, but, as Rivka Iacullo said in today's Thinking Person's Guide to Autism essay, Randomness, "[My child] doesn’t need to be fixed; he needs help in ways I didn’t anticipate."

Here is Robert MacNeil himself, talking with Hari Sreenivasen about the genesis of the series. I think it is important to hear Mr. MacNeil talk about coming at the series as a reporter yet crossing the line into personal territory.



The entire six-part series plus additional interviews and study materials can be found at www.pbs.org/newshour/news/autism.

I've also been enjoying Holly Robinson Peete's series on The Talk, about Teens With Autism. Holly's approach on these segments is all about love, acceptance, and being proud of folks like Winfred Cooper and Carly Fleischmann for their successes.



Have I missed any other recent autism video must-sees?

Speaking of Autism and Bridge Building

I have post on the Autism Speaks blog today: Can You Appreciate My Son's Successes? The essay will be a familiar to you, even if you've only been reading this blog for a short while, as it's a rewrite of the I Wonder if You Can Really See My Son post.

If you've been reading this blog for a while, the fact that I posted at Autism Speaks may shock you -- but not if you've been paying attention lately, and have been reading my articles on BlogHer as well. Last month, I had this to say about my evolving attitude towards Autism Speaks:

Autism Speaks is a controversial organization. They have angered and alienated many members of the autism community. But they are also powerful, entrenched, and well-funded. So, instead of waging war against Autism Speaks, "free range Aspergian" and Look Me in the Eye author John Elder Robison decided to join their board so he could effect change from within:

"There may not seem to be much common ground between the extremes of neurodiversity and those who seek a cure, but I’ll find what there is and try to build more. I hope everyone can see the potential if we can all rally together in pursuit of a common goal."

We've already seen results: Autism Speaks now funds one of my favorite autism community endeavors: Alex Plank's WrongPlanet.net YouTube channel. I can't wait to see what else Mr. Robison helps bring about.

My Autism Speaks article about Leo is not about changing him, or curing him, or seeing past him towards his future -- it is about appreciating him and all his hard work, right at this very moment. I hope that our cheerleading for Leo reaches parents and relatives who haven't encountered loving, accepting attitudes. Autism Speaks recognizes the need for more such positive advocacy, and I am grateful to them for posting my essay (as I am to Jess for orchestrating AS's republish request).

We need more bridges built in our community, but that doesn't mean we need to compromise our beliefs along the way. It makes sense to work with Autism Speaks to spread messages that benefit our entire autism community, just as it makes sense to question them if they misstep.

We need to think big picture. I've been saying that a lot lately. It's why we featured a post on by Holly Robinson Peete on The Thinking Person's Guide to Autism, on autism issues the media continues to overlook. In her essay, Holly spoke about later autism diagnoses among minority children, puberty, adult autistic self-advocacy, etc., -- all issues that need more support, and open discussions. Mentioning her shared concerns with Jenny McCarthy makes Holly's article even more compelling -- she's in no way dissing Ms. McCarthy, but she's pointing out that -- when it comes to our autism community's needs, we need to think bigger, think harder, think more inclusively. We need to try to come together.

Right now.

Blogging Joys and Sorrows

We missed church today, which is okay because Unitarians, they understand when life gets in the way. And ours does, too frequently. But when we miss, it is always because our lives are almost embarrassingly, and certainly exhaustingly, rich and full - like drinking from a chocolate milkshake-filled firehose for eighteen hour stretches.

I particularly regret missing the Joys and Sorrows part of the service, during which community members stand up and declare the highlights and low points of their lives during the last week. I rarely stand up, because I tend to balk even if my news is cheery - so here's the blogging version:

JOYS

Iz was Mary Lennox in her school's production of The Secret Garden. She was amazing, especially for a girl who had never acted before (she was a dancing fairy in The Tempest two years ago, but had no lines or non-dancing scenes). Then again, they needed someone articulate and good at memorizing who could also pout and yell on cue - well spotted, casting director! I think the directors also liked her 500 pounds of long thick curly hair.

In the photo, she has just found the secret garden's key. The painting of her as Mary Lennox is by Lea Hernandez, the artist behind our two Can I Sit With You? book covers. (Lea is currently seeking commissions to help pay for her daughter's education.)

We were so grateful to all the family and friends who came to see Iz perform, and came to the reception at our house beforehand - including all grandparents and godparents. Even Mali sat through the entire play, and enjoyed it, which was a welcome surprise.

I didn't want to torture Leelo, though, so he stayed home and continued to groove on his (no longer our family's) iPad. He will play/do educational activities on it for 20 minute stretches, which is a looong time for him. He continues to impress me with his navigation and problem-solving skills, typing and even willingness to try new games. I am an iPad convert. I wish Steve Jobs would launch a campaign to donate iPads to kids with special needs or learning disabilities. And I'll be writing a BlogHer article on the iDevices revolution and what it means for Leelo & friends (not just autism friends) in two weeks.

Speaking of people who own iPads, I published a second interview with Holly Robinson Peete last week, this time for BlogHer, before the Celebrity Apprentice finale. My sister-in-law Bree said that Holly was very focused (euphemism) on the show, but I have to be frank - every single time I talked or corresponded with Holly, she was intensely friendly and positive. I am glad that Snapple awarded her a matching jackpot to donate to the HollyRod foundation even if Bret Michaels was declared Celebrity Apprentice.

My mom and I have been taking time for short San Francisco jaunts. On our latest excursion, I had the honor of showing her the Coit Tower murals for her first time. And then we sat near Danielle Steele at lunch! My mother asked me how I knew who she was, and I told her that I recognized her from the backs of her books, the ones my mom left lying around when I was Iz's age. My mom proceeded to deny owning any of those books, saying they must have been *her* mom's. Who lived in Canada at the time. Uh-huh.

SORROWS

Watching Glee was hard this week. Rachel's birth mom engaged in subterfuge by proxy, including sending Rachel a tape and talking emotionally about not being allowed to contact her daughter at which point I walked out of the room. Because, yeah, I sent him a mix tape. Anonymously. He did put out a plea on Facebook for friends & family to send him cosas americanos, and he did publish his address, and he most likely thinks it was a friend messing with his head, right?

Related sorrow: My CD burner imploded.

Horrific sorrow: A woman from our church died of a heart attack three days ago. Very suddenly. Pretty much out of the blue. She was a good, smart, hard-working, compassionate person, and the mother of two small children, one of whom is a good church friend of Mali's. So please hug your loved ones. And take care of your health - get chest or arm pain evaluated immediately, especially when they occur in combination.

I went from finding out that news to watching the Grey's Anatomy season finale with my mom, although I couldn't believe she sat through it -- it was all about a shooter taking over their hospital, which is something my mom has lived through. She said she didn't need to leave, and that watching the episode didn't bother her. (If one of your goals in life is to become totally unflappable, you might try being an emergency room nurse for 30 years.)

I can't even really talk about it yet sorrow: A family member's child was just given an autism diagnosis. They're in shock, of course. And I know that they're going to be fine, but it's going to be hard and I have been crying a lot for them. I'm also almost at a loss as to where to start - I have so much critical information to impart. My mom thinks they should begin with Alison Singer's presentation on Parental Perspectives and Supporting Families. I think I should show up on their doorstep, as their own custom 100 days kit. But we'll start with email and phone calls. Please keep them in your thoughts.

And today is my dad's birthday. He would have been 75. Seymour and my mom honored him by bumming boxed lunches off the Hacks & Hackers meetup folks at Seymour's workplace, and enjoying the meals-for-which-the-did-not-pay in a nearby park while Mali launched anti-shyness attacks on passersby. I miss my Dad so much.

Holly Robinson Peete on Autism and My Brother Charlie

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:

• Jennifer from 5MinutesForMom.com
• Fred from MochaDad.com
• Melanie from SavvyAuntie.com
• Ramesh, bringing the Dad's perspective to MommyNiri.com
• and Abigail from BlackCelebKids.com

Here are some highlights:


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

Holly Robinson Peete: Autism Style, Towards Clarity and Grace

I wish Jenny McCarthy would use her celebrity to fight for all autism families who need support. It's infuriating when she promotes her extremist viewpoints as majority autism community opinions, when she sullies autism parents' reputations by belittling mainstream doctors and scientists, and when she uses intimidation and fearmongering to divide our community. I resent her campaigning for "recovery" as the only worthy autism goal, her refusal to advocate for all families with autism. I really wish she had the compassion to be a hope bearer for all our children.

Thankfully, Holly Robinson Peete is more than willing to speak up for the rest of us. And she has done so graciously -- applauding Jenny's spunk and tenacity -- while declaring that it's time to "share the spotlight with other often overshadowed issues that profoundly impact [autism] families daily." What a relief to read unflinching statements like:

"....so many likely will never be "recovered" and nothing, I mean nothing, makes a parent feel more guilty than thinking you could've "fixed" your kid but... well you didn't or couldn't afford to..."

"...the fact that African American, Asian and Hispanic children tend to be diagnosed much later than other children (sometimes 2-5 years later) is extremely concerning and needs more attention."

"Autism is not a divorce mandate."

"The face of autism is changing. Our children grow up. Understandably, every parent stresses about what will become of their child with autism in adulthood."

"Autism Advocates Who Actually Have Autism: What a concept! ...  I've had some ask me to be very mindful about my language when speaking about autism. For example, several have said to me they cringe at the word "cure." Many have expressed that they feel this was their destiny, that they were born this way so stop trying to "cure me." Whatever our views or personal agendas, we have to respect that."

How refreshing, how delightful, to hear a real autism advocate's voice in the Huffington Post!

Ms. Robinson Peete's article is especially appreciated because it comes on the heels of a typical HuffPo Jenny rant. In Who's Afraid of the Truth About Autism, Ms. McCarthy went into full spin-and-attack mode, attempting to re-inspire her believers after an avalanche of formal, high profile decisions destroyed several pillars of the long-derided vaccines-cause-autism theory. (And mere days after Jenny's HuffPo piece, three additional rulings found no link between autism and vaccines.) The Who's Afraid... post is full of standard, inflammatory Jenny accusations such as:

"Who's afraid of autism recovery? Perhaps it's the diagnosticians and pediatricians who have made a career out of telling parents autism is a hopeless condition."

Well, I am afraid of celebrities who use their influence to peddle unsubstantiated and extremely expensive alternative autism "recovery" claims to frightened parents whose children who will mostly not be helped.

Parents need calm, rational advice to help them avoid such "autism cult" thinking. To reassure them that it's Jenny and Co. who consider "unrecovered" autism hopeless, not the other autism professionals and parents -- we're too busy rejecting any kind of "hopeless" thinking, too busy supporting our children, too busy fighting for their rights, for their visibility, and for their acceptance, quirks and all.

I think Holly Robinson Peete may get what our autism families need. I really hope so. And I look forward to seeing just how high she can raise that beacon of hope.

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As of this writing, Jenny McCarthy's Who's Afraid of the Truth About Autism post has over 3,000 comments. Here's one of the keepers, by jim65, whom I'd like to thank for summarizing my own thoughts so clearly:

...[antivaccinationist commenters], this is for you. You may really *feel* like you're rallying around a just cause. You might really *want* to be making a difference.

You're doing it wrong.

If you want to get involved in autism research, then go to school, get an education, and get in a lab. If that's not what you want to do, then leave the science to the scientists, and get involved in your local autistic community. Volunteer. Donate. Raise general awareness. I'm pretty sure you mean well, but the fact is, all you are doing is confusing the folks that don't know any better, dividing the community as a whole, perpetuating a myth, and putting thousands of children a year at risk because their parents bought some of this bad science from someone like you who sounds like they know what they're talking about.

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P.S. I swear I will write about our My Baby Rides the Short Bus KQED Forum interview and readings later today!