5.31.2010

Wakefield Barred by the British General Medical Council: Roundup

If you're going to join the fiery debate about Andrew Wakefield's barring by the British General Medical Council, then you need to be clear about why he was barred: for unprofessional conduct (e.g., taking blood samples from children at birthday parties), and conflict of interest (e.g., having his research funded by "lawyers for parents seeking to sue vaccine makers for damages"). This is a man who swore to do no harm but kept his fingers crossed behind his back during the oath. He is an embarrassment to scientists and doctors of principle.

It doesn't matter how charismatic or well-intentioned Wakefield is, or even if his research had had some validity (it didn't); the man showed "callous disregard" for research guidelines and scientific ethics. He deserved sanctioning. Anyone who claims differently is also claiming that ends justify means, and needs to stay the hell away from any discussion that contains the word "science" unless it's followed by the word "fiction."

A roundup of week's reactions to the GMC's actions, both directly and tangentially related to Wakefield's official sanctioning:

•The man himself. Don't look into his eyes!

  • If you're looking for one Wakefield fiasco link to send your family and friends, I suggest this cartoon timeline (it could have fawned less over journalist Brian Deer, though I agree he deserves praise).
  • I also recommend Anthony Cox of Black Triangle's excellent Wakefield: One Less Crocodile in the Swamp, which reminds us, "[Wakefield's] book, sickeningly playing on the words used by the GMC, 'Callous Disregard' has even been been timed to make best use of the [GMC verdict's] publicity." (Hat tip: Liz Ditz.)

5.26.2010

Mali's Love Book

Mali made me a Love Book for Mothers Day, reflecting her observations from living in a community in which love is not restricted by gender. *Sniff*



She has since been making more books for me, with the expectation that I will shriek with delight and then make a video which will be posted on the Internet. Someone needs SpongeBob SquarePants Split Pants episode refresher, methinks

As long as we're plucking those heart strings, check out this video by Jack Black, rockin' out about autism and sensory issues: How did I miss this? Who knows! Enjoy:

When Someone Is Wrong on the Internet!

The comments thread for my recent post What Are You Thinking? Part 2: On Autism and Vaccines is 42 opinions long as of this writing. It's a spectacular irony showcase, as anonymous commenters sling the ad hominem while others attempt to equate belief and anecdotes with truth -- in a post dedicated to skepticism, the importance of research and open-mindedness, and the pitfalls of black-and-white pronouncements. (The comments also contain fine writing from evidence-seeking critical thinkers.)

I didn't respond to every point, and I'll tell you why (this is pulled and edited from the comments themselves):

I am disinclined to engage with people who feel threatened by neutral statements (e.g., suggesting people think for themselves), are dismissive (insisting that scientific studies are bogus but their anecdotes are legitimate) or perseverate on details to direct attention away from a larger argument.

I am also leery of those who pull a J.B. Handley in claim-jumping expertise (e.g., "[Alison Singer] annihilated the truth about what Wakefield actually studied in 1998, while inferring that she belonged to the group of people who understand science, much as you have done here." [and I believe this person meant "implying."]) yet leave their name unlinked.

Belief can lead to righteousness intoxication, making releasing those beliefs extremely difficult, because then where would you get that high? What would you have left?

We all have the right to share our beliefs. But we do not have the right to expect others to accept them, especially when the evidence to the contrary is so strong.

5.23.2010

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.

5.21.2010

What Are You Thinking? Part 2: On Autism & Vaccines

I am pulling and expanding this from a comment I left on my What Are You Thinking? post, about the necessity of skepticism over belief with autism parenting choices.

When it comes to autism and vaccines, you need to know what both sides are saying, but that doesn't mean they deserve equal weight. Again, it's about belief vs. research. Akin to Intelligent Design vs. Evolution (the NOVA episode Intelligent Design on Trial is worth your time).

Consider the perspective of Alison Singer, science advocate, formerly of Autism Speaks, currently of the Autism Science Foundation. When she speaks on autism and vaccinations, on why parents make scientifically unsubstantiated choices, she does so with diplomacy and compassion:
SR: Why do you think scientifically refuted claims of autism causes (vaccinations) and cures (chelation, etc.) find such a wide audience?
AS: I think it’s because parents love their children so much. It’s very hard to accept that your child is going to struggle and have these tremendous challenges. It’s natural to want to blame someone or something. Believe me, I've been there. But parents need to look at the data. You can't be so focused on anger that you lose sight of what the science is saying because that's really not in the best interest of the kids. I would encourage parents to look at the science and make decisions based on the science. And the science is clear in the case of vaccines and autism. Vaccines don’t cause autism. I think families were right to ask that the vaccine studies  be done in the late '90s and the early part of this decade, but our public health community really responded to that. And we now have dozens of studies looking at vaccines and vaccine components, all of which have yielded the same answer that, no, vaccines do not cause autism. I think we owe it to our families, we owe it to people with autism, to fund studies that are likely to yield new information. If you keep asking the same question, you're going to get the same answer. We have to ask new questions and try to find out what really is causing autism.
For contrast, when antivaccinationist J.B. Handley of Age of Autism talks about Ms. Singer's perspectives on parents making scientifically refuted choices, he does so with rage and contempt, e.g., today's post: Alison Singer Mispeaks at Yale: Flaming Moron or a Flaming Liar? Excerpt:
"...Ms. Singer explained how many of us delusional parents have no training in the scientific method. With our tiny minds, we just don’t understand the science that’s being done around us to help our kids by the big guy, the benevolent public health system. With her snide tone and rolling eyes, we’re all supposed to understand that Ms. Singer is on the other side of this contrast: she gets it. The science. It’s the Autism SCIENCE Foundation, after all. Poor desperate parents with their teeny little minds, they are so gullible. And stupid."
I cannot take people who froth and rage and point fiery fingers seriously, not when it comes to science, not when it comes to research, not when it comes to making decisions that affect children's welfare. While it sometimes seems that we autism parents are running on naught but passion, we also need to remain clearheaded about the choices we are making, and why we are making them.

There are children who have legitimate reactions to vaccines - but those reactions are rare. No science supports an autism/vaccine link, though a lot of science refutes it. I think a lot of parents - not all - become aware of their children's autism traits around the same time those kids get the big vaccinations. And since those parents then want answers about causation that scientists can't yet give them, they are vulnerable to angry people who claim they do have autism answers (see my BlogHer piece from last year: Identifying and Avoiding Autism Cults).

There is a lot of vehement misinformation out there, and you need to be able to parse it without falling into the emotional traps that believers like J.B. Handley lay so expertly. Be wary. Be smart. Be your child's champion.

Update: Turns out Emily was blogging along similar lines yesterday and today, with different examples and in tapestry-like detail (if you don't follow her, you should):
Update #2: A reminder that it is the sensation-seeking media which perpetuates antivaccinationist viewpoints as "legitimate" and gives willful misinformationists like Dr. Andrew Wakefield heavyweight status, whereas an objective analysis gets Dr. Wakefield laughed out of the ring before the first bell.

5.19.2010

What Are You Thinking?

This one's for the autism parents:

To be clear: I opine in this space, at length, usually about autism topics. I have strong opinions, but as those opinions are rooted in experience combined with constant reading and research and conversations, I'd like you to listen to them. But I never expect you to do what I do and repeat what I say. What I hope is that you use the information I give you as a starting point for your own reading, and research, and conversations.

I expect you to think, and think hard. I expect you to acknowledge that neither you nor I have all the answers when it come to autism, and that it's okay to say so - as long as we all keep trying to inform ourselves, as long as we keep listening.

I expect you to question all provocative autism pronouncements -- mine included. Especially when it comes to vaccine-autism causation claims, whether about pig viruses, about destroying the vaccine program, or about the zero, not "thousands" of autism claims awarded by the National Vaccine Injury Compensation program. I expect you to question, examine, and dig as deeply as you can.

I expect you to be a skeptic. Otherwise, you're nothing but a believer. And while belief may bring you solace, it does jack shit for your kid. Step up.

5.18.2010

Why I Always Buy Raffle Tickets

My Dad entered every last contest he ever came across. If you didn't know that about him, you might have assumed he was amazingly lucky, because he was always winning things - tickets to movies, restaurant meals, electronics. He even won a VCR, back in the day when they weighed 30 lbs, came in two pieces, and almost no one had one. It was cool to have the dad who always got free stuff.

I don't quite have his work ethic, but I do try to buy raffle tickets whenever I can, especially if they are for school fundraisers. Apparently, this is a good strategy, because in 2008, I won a Vespa.

And today, through Iz's friend Merlin's school raffle, I won an iPad!

We all love it. We're all trying to swipe it from each other. We're all in its thrall.

I was a bit skeptical at first, considering it redundant in our newly-initiated iPod touch household, but it's really damn cool, and works better for Leo in many ways.

The bigger screen area is so, so, so much easier for Leo to manipulate. We're still working with him on positioning his hands so his passive hand's fingers don't creep onscreen, and on keeping his active hand in pointer position so its non-pointing fingers don't drag, but wow. He loves it so much he's been grabby with it, which doesn't usually happen with non-food items. He applied his iPod navigation skills instantly, which may motivate acquisition/reading of its menu words. He loves watching his favorite videos on the beautiful clear screen. Motivating, motivating, motivating. 

The only issue will be, again, fighting over it - his dad and his sisters love it, crave it, need it - can't you tell they need to have it right now? Seymour specifically geeked out on public media sites like NPR and KQED, both of which look great in iPad format.

Since she was mostly denied access (Leo's not really sharing when he has a choice), Mali wrote out an entire new group of apps that she would like our iPad to have. The one she really wants app developers to get a move on is "Poop," which she says features animals that poop every time you poke them, and to me sounds like a variation on Peppa Pig's Happy Mrs. Chicken egg-laying game. I do like her icon designs, though.
 

Yay for raffles! Yay for devices that make our entire family happy! Yay for non-food items that engage Leelo so wholly!

5.10.2010

Interview: Rupert Isaacson, Father of The Horse Boy

Rupert Isaacson and Kristin Neff were in crisis after their son Rowan was diagnosed with autism, because for Rowan autism meant constant distress, tantrums, and social isolation. His parents sought out the best help and therapies, but little helped ease Rowan's dysfunctional autism symptoms until the family stumbled upon Rowan’s connection to horses and shamans, which then drew the three of them to Mongolia for "an epic quest for healing."

As you might suspect, I approached their story with skepticism, mostly because it was lumped in with Miracle Autism Cure books. But The Horse Boy is not just different from other autism books -- in its depiction of a family who accepts their child for who he is while refusing to stop until they heal that which is causing his misery, it is unique. 


Rowan is a very different child from Leo, so though I'd read about Rowan's distress, I didn't fully understand how intense it was until I saw The Horse Boy movie. If you're able, I recommend taking in both the book and the film.

I had questions aplenty after reading and watching The Horse Boy, and so was thrilled to be asked to talk with Kristin and Rupert. They were both charming, wise, and compassionate -- united in their love for and dedication to Rowan, but comfortable with their own opinions about parenting a child with autism and their Mongolian experience.

My interview with Kristin was published on BlogHer. Here is my interview with Rupert, trimmed of our excess incidences of "obviously" "exactly" and "absolutely."


I was very inspired by The Horse Boy, by the fact that you sought out your son with autism's strengths and interests and affinities in horses, in shamans -- and did your utmost to support him.

I think I just did what every parent does. I honestly think that most parents in our situation routinely go to the ends of the earth in their own living room, every day. In our particular case it meant a physical journey. But even if we had never left Texas, the process would have been the same, I think.

Remember, it wasn’t my idea to put Rowan on Betsy [the horse] – I was actively keeping him away, and the [initial, U.S.-based] meeting with the [Bushmen] shamans happened completely organically when I was bringing the delegation to the United Nations. They met Rowan and they did a bit of work, and it was like “Oh, we’re getting a result.” But I didn’t have the theory that “Hmm, maybe if I put him on a horse” or “Maybe if I take him to the shamans” -- if he had a positive reaction to something, I followed it.

I appreciated reading the book and then watching the movie, because children with autism are so different from each other, and you got to see that Rowan wasn’t a stereotypical remote autistic children. You got to see that yours was a child in genuine distress, and see that you really needed to help him.

Yes. We were in crisis.


And then you got to see his genuine soothing, the scene where he was on Betsy, just communing with her, got to hear Kristin’s voice as well. The book and the movie worked together so well.

So, now for the actual questions. Have you heard accounts from other parents of children with autism who have been inspired by your journey?

Yes, there have been a few, actually.

It started with a guy in New York, a banker, who wrote and said “How do I go about a Mongolia trip?” And I told him, “It’s not really that difficult, you just need to contact [their Mongolian guide] Tulga.” And they went, and they met with Ghoste [the shaman], and they reported a really good result. And in fact, they flew one of Ghoste’s protégées, a younger shaman, back to New York, and I think he’s still there, staying with them right now. He was certainly there a few weeks ago.

I’ve heard from other families who did similar journeys, not because they read The Horse Boy, but because they read The Horse Boy and realized they weren’t the only ones. There was a family in New Jersey who had taken their kid to see an Ecuadorian shaman.

A woman I know in Washington D.C. whose son suffered a traumatic brain injury, it might as well have been autism, because they had to bring him back from zero functioning, and he’s doing amazingly. And they were at Johns Hopkins hospital in Baltimore -- that’s very East Coast, not the least bit woo-woo -- but it turns out they use traditional faith healers in a couple of the wards.

I also found out that in a lot of the hospitals in New Mexico and Arizona, where there’s a strong Native American population, are letting shamans into the wards, healers into the wards. The doctors there say, “Well, we don’t know why, but people seem to get better quicker, and vacate their beds quicker."

So, yeah, I’ve had quite a few contacts with people like that, whether they’ve done exactly what we’ve done, or whether they’ve done something similar.

We also now run these camps here in the U.S. and the UK, and we’re starting to do them in Australia, and other parts of Europe where we do a three- to four-day immersion in nature, camping, as a family, with your child, with the horses, and making something of a journey, every day on horseback. And we’ve seen incredible results with that. There aren’t shamans involved, but nonetheless we’ve seen some non-verbal children become verbal and things like that.

In fact I just had a French family out here last week, we worked with their child for about four days and I didn’t really think we were getting anywhere with her, but I just got an email yesterday saying that she started speaking some words the day after they left, and now she’s effectively verbal.

I’ve also talked to people who’ve been working with therapeutic riding for years who’ve said, “Oh yes, we were doing this thirty years ago.” [laughs] Something like our book becomes a catalyst for people who have already been doing these things in isolation, who say “We’ve been doing this too, with good results.” So there’s been quite a lot of it.

I’m not going to say it works for one hundred percent of the kids. But I think any autism parents gets used to trying a few things before you hit on something that works. I’ve seen some things work really well for other kids that didn’t work for Rowan. And it doesn’t mean they’re bad therapies, it just means that, as you know, autism manifests so differently in each case.

Yes, I’m convinced that “autism” is an umbrella term for a bunch of different conditions that will be teased apart eventually.

I agree.

So, I wanted to ask, and I’m going to ask Kristin this question too: you were flogged, you were asked to ritually cleanse your private bits on camera, you ate what was described as "shit soup," you struggled through Siberian swamps on horseback. What enabled you to endure, and keep going?

[Laughs] To be honest, the only thing that made Kristin balk was going on horseback, because she’s not really into horses. But I met Kristin in India. She’d already been living there about a year by herself. And immediately I met her we were off trekking through the rainforest, we hitchhiked across Africa together. She’s an adventurous woman.

Partly, we’re relatively used to challenge and discomfort when we travel; if it’s really interesting, it doesn’t matter. And also, your average trip to the grocery store with a severely autistic child is so fucking stressful that you might as well go to Mongolia!

I mean, when you’re getting vomited on at 70 MPH on the freeway, and screamed at and hit and shat all over, and everyone telling you what a terrible parent you are for not controlling your child, well, why not go to Africa or Mongolia? How much more stressful can it get? So that was to some degree our attitude.

Did you experience any horrors that didn't make it into the book?

I think they’re all in there, actually. For the film, you have to be more selective, because you’ve only got an hour and a half, and also if you don’t have footage of it, you can’t show it, like one of the accidents I had, on horseback where the horse disappeared into the bog and rolled over – no one was filming it, so you can’t show it. It’s pretty much all in there.


Rowan was named after your Bushman shaman friend Besa – has Rowan seen Besa since you returned from Mongolia?

Yes! Ghoste told us we had to do a shamanic journey every year for three years. So in 2008 we went [to see Besa], and Besa had to come from the country he lives in, Botswana, into the neighboring country, Namibia, because I’m actually banned from Botswana. Logistically it was all quite crazy – I had to get him a passport, and he lives under a tree. But we managed it all, and there were two fantastic Namibian Bushmen healers who also worked on Rowan. And when we got back from that trip, what happened was something we weren’t looking for at all, which was a mathematical dialog. Rowan suddenly got to grips with math in a way that he had not been able to before.

And then this last year, we were in Australia for work, with a Yalanji Aboriginal shaman, in Northern Queensland, in the rainforest under New Guinea, and that was extraordinary. At the end of that healing, Rowan sat up on the bench and said, “I feel better in my head! I feel happy!” then ran off to chase this brush turkey which had scooted by, came back, gave the [shaman] a hug, and buggered off again.

This year we’re going to be on the Navajo reservation here, working with healers. That's partly in reaction to people sometimes saying, “Well it’s all very well and good for you guys, you going off around the world, but what about me here in the U.S.A.?” So this is just going to be a two-hour drive from Phoenix. A lot of this is more accessible than one might think.

What is the role of rhythm in these shamanic experiences? How much rhythm is involved?

All of it -- song, drumming, dance, trance -- is always done against a backdrop of rhythm. Almost without exception. Even when it’s a single person, singing by themselves, they always get into a rhythm.

Then of course with riding it’s the same thing. You ride a horse, you’re in rhythm.

And we’ve always danced with Rowan, always always, we do this kind of hippie dance, called Bodychoir, quite often. He’s been going since he was in the womb. People will tell you that in order to be a healthy, happy human being, you should get together in community regularly and dance.

If you ever do any therapeutic riding, keep in mind that that’s one of the reasons we do so much riding with the child, sitting behind them, because that way you can really get into a swinging rhythm with the horse’s back. Then you sing as you go, and you tap on their body, and you’re a voice in the air, you’re not a face that the child has to protect themselves from. But with most therapeutic riding, you don’t get to do those things, they say their insurance won’t cover it.


When you returned, you founded New Trails - an equestrian center that brings kids with autism and special needs together with neurotypical kids. What kinds of successes have you been witnessing?

Usually it comes down to kids who are non-verbal becoming verbal or kids who are barely verbal becoming much more verbal, and kids with neurological issues getting through their issues. It’s a mixture of those two things. That seems to be where we see the primary benefit.

But we also create this social environment, because we always have the families come out. There’s no drop off. If they have a sibling, we say bring the sibling, because that’s the expert we need. And then what we’ll do is we’ll have the sibling, the autistic kids and the non-autistic kids all playing together. So our two most useful pieces of equipment are not our horses – they are our trampoline and our swingset climbing frame. They’re all on there together. And we have other animals – we have bunnies, guinea pigs, reptiles, what ever the kids are going to respond to – toys, books, etc. They can go anywhere and do anything. It’s not a barn. There’s no stable they can walk into and accidentally get under the feet of a horse. The horses live outside, and they all have shelters they walk into together to get out of the wind.

The kids can’t get in trouble. We’re not ever having to say, “No, don’t! Stop!” But that social thing seems to be really important, where they make friendships across the autism barrier. We see magic happening between the children. And a lot of it is really us just creating that environment and then standing back.

We have specific techniques which seem to bring out the verbal skills, the most crucial of which is a big western saddle, oversize, with room for both an adult and a child, either I or one of the volunteers or a parent or a trusted therapist, will get up there with the child, and we’ll go trail riding. We go into the woods, we talk about everything we’re seeing. Sometimes we don’t do it as a trot, we do it as a canter. This brings out a euphoria in the child, and we often get words afterwards.

And then all the horses are circus-trained. I’ve trained them to do tricks. So if you say “down,” the horse will bow; if you say “up,” the horse will get on its hind legs. That way, if you have a child who’s on the cusp of being verbal, and they attempt this one-syllable word, they get this HUGE payoff! It’s really cool, and it’s really empowering, and it’s just fun. And then they’re often inclined to do it again, and I have to train the horses to do more tricks because the kids get ahead of me.

A lot of time, for the sensory issues, is spent lying on the horse, bareback; just hugging it, lying on it, using it like a big ol’ couch. We have someone standing there just waiting to scoop the child off should the horse spook or something, so we make it safe, but we keep the time frame very open-ended. We say, “If you come out at ten o’clock, we’ll probably ride somewhere between ten and eleven, but you can hang out as long as the kid needs to hang out. And we make sure we have enough volunteers to handle that.

Is Rowan actively involved in New Trails?

Yes he is. He goes to school there. He does his academics there in the morning, with the volunteers, and then in the afternoons, he’s there for the play dates. He’s very much around.

It’s been three years since Mongolia, so Rowan is eight now. What wonderful things are you noticing about him lately?

It’s intersting, you know, because he’s still autistic, obviously, he’ll always be autistic. The word “cure” never passes my lips. But I do think there’s a difference between the word “healing” and the word “cure” that’s very specific. Healing is, if you like, the grand amelioration of negative symptoms to the point that a condition is no longer a dysfunction or a disorder, or a disease even.

So then you can say, “Well, what are the strengths of this condition?” When the dysfunctions went away in Mongolia, the incontinence, the tantruming, the inability to make friends – all those stopped, either during or right after the various rituals that we did in Mongolia. Then suddenly, you could get interested in “Yes, but there are these special intellectual and emotional gifts of autism,” and that’s what we see much more, so academically, he’s way ahead, like a whole grade ahead. I’ve noticed this with a lot of autistic kids, unless there’s another kind of condition associated with the autism, causing mental retardation or something like that, most of them, the intellect is not the problem. [Rowan’s] a second grader but he’s finishing the third-grade curriculum now.

And the next film and book is his idea. He came up with this word called, “Endangerous,” meaning animals that are both endangered and dangerous. And we are off to look at endangered animals and film them. You’ll be seeing this changing planet through the eyes of an autistic child. I asked him if he wanted to get behind the camera for this one, and he said, “Yeah!” We’re getting as many people on that team as possible who are on the spectrum. So that’s going to be interesting, and it all came from him, it wasn’t my idea.

So he continues to lead us. All he has to do is tell me something he wants to do, and I’ll go to bat.
Conversationally and socially, he’s really caught up, this past year. But he still has that quirky, on-his-own-terms way of doing it. But increasingly, people who meet him don’t necessarily know, until they hang out with him for quite a while.


The reason I ask is I’m tired of people asking after the challenges of raising a child with autism and never asking after any positive things. We already know autism is challenging, the media hits us over the head with it. I’d like to see more balance.

There is one thing where the negative stuff can be useful, when you’re in a market or school or some public setting, so people have some awareness of why that child is behaving like that, and they’re not going to walk up to that parent and tell them what a shit parent they are. That’s useful, to understand what they come from, and the exhaustion that the parents go through. And also the distress and suffering that the kids are going through!

But the balance, that’s not part of the dialog, which is very much the Western way, isn’t it? There’s a problem, we must fix it, and that’s good to some degree, but part of fixing it is looking at what’s good, and encouraging that.

It seems to me that a lot of parenting of non-autistic kids is also done from the negative, it’s all about discipline, about what they shouldn’t do, not about what they can do or ought to do.

Instead of understanding their behavior, which is the root of ABA or Applied Behavioral Analysis.

Which can also be applied inappropriately, especially if you’re a new parent, in fear, in grief – you’re very vulnerable to the more rigid ABA therapists coming in and saying, “My way or the highway,” and they sometimes do more harm than good. Even though the methodology of ABA is sound, the application can be flawed.

A lot of what we did with Rowan on horseback you could say is ABA, the rapid response stuff. But I was doing it in an environment that was intrinsically motivating. I wasn’t saying, “If you comply and do this thing, I will reward you by taking you riding;” it was like, “I know you want to go riding, so let’s do it there.” I think that giving kids a negative experience until such time as they respond and then rewarding them, that’s like bad horse training. You don’t train a champion that way, because the choice doesn’t come from within the child.

Exactly. If you don’t understand what’s behind the behavior of any child, parenting them is going to be difficult, because you’re not understanding that behavior is communication.

We’re big believers in community visibility as a form of activism. I know that you’ve had a lot of bad experiences, it can be so traumatic to take your child with autism to the grocery story if that’s overwhelming for them -- and so I was wondering how Rowan is doing in terms of being out and about in the community these days?

Any of the problems that were like that up to Mongolia, all of that stuff is a memory. I was quite worried when we got back from Mongolia that he’d regress, because with the first exposure he had to Shamans [in the United States, before Mongolia], he really did start to lose some of his more excessive symptoms, and then he fell back into the depths of them once the shamans went home. But, after Mongolia, they never came back.

So, Rowan out and about is a delight, but it wasn’t always so. Something I think is not a bad plan is to contact the manager of your local supermarket, and say, “We have these kids – could we have a day where we bring several of them in? Alert all your staff, this is what it’s going to be like, there’s going to be some shouting, but hey – we’ll spend some money.” That kind of community education is quite good – you’re not really asking anyone to do anything, you’re just making them more aware.

At the end of the book there was an incident with the psychologist with the German accent, who thought that Rowan didn’t have the right to be out in public. So how surprising, to have this huge success with Ghoste, and then you be censured by this stranger, in public. And you said you got it on film?

We did get it on film, but the distribution company said, “No, you can’t put it on film, we’ll be sued.” But it’s there!

The only reason I didn’t hit him – ‘cause I was so ready to hit him – is that I thought actually, no, this is a great gift – this is exactly what the problem with the West is in this particular type of situation, this type of judgmentalism – My God, he’s a psychologist! Of all the people who ought to know better! If that isn’t a metaphor for what needs to get better, so I just need to keep the guy talking, because he needs to show us who he is, since he’s not actively harming my son. So then I started asking him all sorts of questions. And then his answers got bananas! Saying that “they” could be there for a short time, as long as they didn’t cause these neurotypical people any problem. And what was interesting to me is that he had zero professional curiosity.

Thank you for this conversation, I truly appreciate it. Is there anything else you'd like people to know?

Most of the professionals we dealt with, with the best of intentions, basically told us that our lives were over [because of Rowan's autism]. And I remember thinking, “I don’t believe you. I think this is going to be the biggest adventure of all. And this is going to be a beautiful adventure. But it’s going to be real adventure.

And long before he got to Mongolia, if you go ride where I ride with Rowan, here in Texas, we’ll ride for three-four hours. We’ll see peccaries, we’ll see coyotes, we’ll see snakes, we’ll be chased by ornery cows, we eat while food, we’ll tie the horse up and climb trees, we do stuff. That thing that you are disqualified, or somehow you as a family are disqualified from adventure [because of an autism diagnosis] is such an unwittingly neo-fascist approach.

If you go to the Kalahari or Mongolia, life is so harsh and practical there, you’re not going to do something because it’s a whimsical notion. There, neuropsychiatric symptoms in children are regarded as qualification for a job. That is a fundamentally different approach. And it’s not just “Oh, let’s give the poor little bugger something to do,” It comes from the practical approach of if someone can do something, let’s have them do something, because we cannot afford to waste a single human resource. And so, guess what, we’ve had 50,000 years in this particular environment, and we know from experience that kids with the neuropsychiatric stuff, by the time they hit puberty, they are going into training as shamans because they seem to have this affinity with the spirit world, seem to have already one foot in it, and a special sensitivity. So they are then qualified for this integral role. Not the Special Olympics, but an integral role.

A guy like Besa [the Bushmen shaman] is a complete adult autist. I’ve never had a proper conversation with him. He doesn’t looks you in the eye, he speaks in incomprehensible riddles, and yet people come from all over the place to be healed by him, he’s got a wife and kids, he’s completely integral to his community. In our culture we have a relatively narrow choices for how you can participate economically. But in some other cultures, ironically, the playing field is much wider. And I suspect that with the massive rise in autism that we’re seeing, that the nature of our own work force is going to change dramatically in the next thirty years, and it’s going to change for the better. Because our society will not be able to do without the human resources of these people. And I don’t mean just the high-functioning people or the people with Asperger’s, I mean the classic autists. That, to me, is really interesting and exciting. And society’s not going to do it because they want to do it, because they don’t want to do it – it involves effort. They’re going to do it because they have to do it, when it hits people’s pocketbooks.

---


If you'd like to see The Horse Boy movie, it will be shown tomorrow night, Tuesday, May 11, courtesy of PBS's series Independent Lens. It's repeating several times in my region, so be sure to check your local listings for times.

5.08.2010

A Lot of Deliciousness

Too many wonders, too many activities, too much fun, too many friends, too many opportunities, too little focus, too few hours = too little sleep. This action-packed life is wearing me down and haggardizing me something fierce - but at least I got my hair cut + re-technicolored so I look somewhat like the woman I'd like prefer to greet in the morning mirror:


What else? A lot.

I've started going to yoga for the first time since Leo was two. And I'm in pain, but it's the kind of pain that just makes me angry because if I had been taking care of myself, there would be no pain. The pain, it will go away, and I will be a strong springy bendy doll once more.

Leelo competed in his first Special Olympics today! He ran (okay, walked then skipped) the 50-yard dash, did the softball throw and the long jump. It was wonderful to see him and his friends and peers having such a great time - and seeing so many kids with special needs together and knowing they were only represented a portion of the local public schools' classes made me wonder where all Leo's friends are all the time, about town? We need to do a flash mob, seriously, so people know just how many kids of ours there are. Maybe Sunday, June 6th,  Strybing Arboretum in SF (free, fenced, though there is at least one small lake and a large fountain) at 10 AM, which should be early enough to find parking? Meet near the big fountain in the middle of the Great Meadow?

Two weeks ago I went to an autism art auction and benefit, which was pleasant fun until the bidding started and I was required to compete for my own son's artwork. Which I won. Isn't it beautiful? Leo's first guided art painting:


The store that sponsored the benefit, Jigsaw Java, also sold jigsaw puzzles made from all the kids' paintings. Leelo's not up on the online store yet, but I've been told it will be, soon. If you're local you can definitely buy Leo's puzzle, called Flowers for Me, at the store itself.

Leo continues to love music. I am trying to find someone to work with him, may possibly have found a drumming instructor if we can find a way to wedge those lessons into our overfull schedule. Here is he guiding his dad through some tunes on the Kazoo.




We got Leo an iPod touch and he LOOOOVES it. See? His sisters might like it more than he does, though, so we are being coy about where said iPod lives when Leo is not using it. But damn, iPod/iPad/iPhones, they are made to work with kids like Leo - touch & drag interface is intuitive for him, and I keep stumbling on apps that work just right for him - but please let me know if you have any favorites for your kids as well.



Don't leave your iDevice unattended in our home, is my advice to you. See what happened to Susan's iPhone?

Swimming season has opened at our house, for those impervious to the cold and wet. Which apparently includes Godfather Michael the BUNNY-HATER:


Did I tell you that Iz got the lead role in her school play? Which starts in two weeks? And that I usually don't let her audition for plays because of the parent commitment required, but figured that she'd be a flower or scullery maid because she hasn't been part of the school theatre scene for 2.5  years? So I am proud of her and she's doing really well but wow. Lots of work for me even though I was careful to choose all offsite tasks. I will complain to you because Iz must never know how bummed I am about the extra work. Though I will execute it to the best of my ability and without complaint IRL, and she will shine.

She has sooooo many questions about the Marvel Universe, and Marvel 1602 specifically. Why, for instance, was Charles Xavier Spanish? And who is that Natasha, the most dangerous woman in the world? I am a Marvel noob (though I'm greatly enjoying the Civil War series, which I picked up from the half-price DANGER DANGER rack on Free Comic Book Day) and am not much help, not yet. I am educating myself, and am enlisting knowledgeable sorts to talk comics and feminism and history with her, and am racing to read ahead of her - she reads so damn fast.

Mali, who is pissed that Emma Frost isn't in the X-Men movies, continues to be our entertainment channel. Check out this video, which I took yesterday for an upcoming review. It's a word substitution song. Our cheeky girl sang about fairies and flowers and then BEER. I suspect it's an X-Men/Wolverine influence, but, again, you can imagine my pride.



And here are some other gems from her from the past two days, a few of which I've tweeted already:
  • She has decided she is a superhero whose name is American Blue Butterfly! Not sure about the superpowers yet, but when she's in costume, she refers to herself in the third person only.
  • She set a Time Timer in front of me and told me that I had five minutes left before I had to get off my computer so she could use it to watch VanHalen videos
  • After I dropped her off at school today and drove away, she waited by gate until everyone else went inside and the bell rang, then marched to the office to get a late slip because she wanted to know what it was like. (Another mom pulled me aside during pickup, and when she could stop laughing, outed my girl.)
  • We've been planting seeds and watering them and cooing at them, which is a good strategy because now they are coming up. She says my super power is making plants grow.
  • Whenever she wants to do a project and I say no, she says, "Oh, but my teacher told me to." Playing the absent authority figure card, sneaky! Today her teacher told  her to use printer paper to draw and then piece together a 2-foot-high boy named Bob who has googly eyes and lives in a cardboard box.
  • After we watched MC Hammer's video for U Can't Touch This, I told her Hammer lived across the Bay. She would now like to go visit his house so he can teach her to dance. Anyone want to make an introduction?
And that is the tip of the firehose. Hope you all have a loverly, firehose-free weekend.

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