5.22.2014

Happy! Because of IMFAR & Despite Trial By Fire (Yes, Literally)

Image: Selfie of me & Leo. We are a pale-
skinned, dark-eyed duo. His hair is curly &
brown, mine is short & red.
April's autism awareness/acceptance marathon wore me out, as it does most people involved in autism-centric advocacy. Plus the International Meeting for Autism Research (IMFAR) came right on April's heels, and also wore me out. In a (mostly) worthwhile way. And all by choice.

But, both sappily & sincerely, any fatigue vaporizes when I spend my first day home from IMFAR driving around with Leo, and he turns to me with a big smile and declares, "Happy!"

Dude, me too. I'm glad to be back with you and back to our regularly scheduled program. I'm glad that your AAC trial period was a success. I'm glad that the pool is now lovely and warm and swim-ready and we've entered the insta-bliss period of the year.

(...and I'm glad you and your sisters were deeply asleep the night after I got home from IMFAR and woke at 4:30 AM to the smell of smoke. I thought perhaps you or your sisters had decided to experiment with matches or candles (scary but it happens), but quickly realized you were all asleep. Then I followed the smell out the front door, looked across the street -- and saw a wall of flame and smoke, complete with extra-loud crackling campfire noises. I am glad you all stayed asleep while I called 911 and your dad ran across the street to discover that the fire was actually the front patio furniture and built-in benches [BBQ mishap] and that the residents were all OK if, initially, deeply asleep. You might have enjoyed watching him put out most of the fire by himself until the residents and then firefighters pitched in. And I hope you were listening later on when I lectured you about fire safety and keeping the damn long dry grass cut short -- wildfire safety is no joke in these hills, especially not during this super-dry season. We are all spectacularly lucky the entire neighborhood didn't go up. I think I'll continue sleeping with at least one window open until we get some rain.)

But back to IMFAR. Carol Greenburg and I provided live coverage on Thinking Person's Guide to Autism Twitter and Facebook, and you can do a keyword search of the abstracts to see what researchers were presenting. I was pleasantly surprised by conference's progress in terms of minimized pseudoscience (Arthur "scope 'em" Krigsman's "autism is GI immunoinflammawhatzit" poster was a quackery holdout, and was adjacent to an NIH/Hopkins poster stating that immunological abnormalities in autistic kids were "unrelated to autistic symptomatology"). Another surprise: The emphasis, front-and-center acknowlegment that autistic people grow up and age, and that perhaps we need a whole hell of a lot more research into what autistic people who are not kids need?

Image: A swirling, blurry multi-colored carpet
seen from overhead, with a leg & shoe
coming in from the right.
IMFAR as an four day immersive experience was of course very very overwhelming, with all the info and social firehosings. My brain is still rebooting. I found this photo of the conference hotel carpet on my phone amidst the other IMFAR pics -- and, yeah, that's what it felt like. Especially since my computer's trackpad gave out, giving me a 35% chance of being able to click on objects at any time, coupled with flashing and dancing screens, and constant attempts to auto-define words anywhere near my cursor. Really fun, that, especially during live-tweet sessions. (Perhaps Stephen Shore, who was sorely missed this year, could use a similar experience as one of his sensory/disability simulations.) The real-world effects of my computer still being f'd up is that my IMFAR reporting is coming out in trickle rather than traditional firehose mode. But it's coming, so stay tuned.

Thankfully I was able to focus my mindpowers and force my computer to mostly cooperate during the SFARI-hosted IMFARchat TweetChat, during which science communicators, reporters, and autism org reps chatted about autism science & research topics & priorities. And we met so, so many wonderful people during IMFAR and learned, so, so many wonderful things. Carol and I also stayed with my wonderful best friend from high school and ate wonderful food and saw wonderful whale sharks. I am glad I went.


Video description: Whale Sharks! In an Aquarium! With people walking around underneath them!

That gladness was not confined to The Peach State: IMFAR inspired me to take immediate advocacy action in the real world. Right before I left for Atlanta, Leo needed a blood draw. He doesn't like them, but he's usually a sport. His phlebotomist was not; despite my attempts to advise about Leo's needs and concerns and to please not objectify my son, that phlebotomist was vocally less than respectful about Leo in front of Leo. And here's where I will admit to one of my personal failings: I shrink from confronting hostile people IRL. Especially when Leo needs all of my attention, and is extremely distressed. Which means, furious as I was, the phlebotomist got no blowback from me beyond WTF face.

Image: Academic Presentation Poster: "Autism Comes to the
Hospital: Perspectives of Child Life Specialists."
Blue bar on top, three columns of text paragraphs
superimposed on a gray caduceus.
I ruminated and fretted about the incident and my being a goddamn wimp throughout IMFAR. Until I came across the IMFAR poster Autism Comes to the Hospital: Perspectives of Child Life Specialists, which describes tools and strategies for helping de-stress autistic kids in medical situations, and emphasizes the need to train medical staff about autistic needs. So when I got home, I contacted Leo's medical office, let them know who the offender was, let them know what had happened -- and sent them the poster abstract so they could start working on making autism-accommodating tool kits of their own. They took my concerns very seriously and are talking with the phlebotomist.

Just so glad to be home. (And that I had a home to come back to.)

5.08.2014

Don't Think Twice It's Alright

One of our family's favorite people passed away yesterday. H. was almost 81, and he'd been unwell for a too-long stretch, and we're going to miss him like hell.

When Seymour and I moved here 20 years ago, we did so via a meandering drive across the country. We started in Brooklyn Heights, packing up a moving van with Seymour's worldly goods and his pet snakes. The van broke down in Charlotte, North Carolina; we acquired a slightly feral flea-bitten kitten (Pat) at the van yard, and he rode in our laps across eleven states. We visited friends in Atlanta and Oklahoma City. We got engaged in Arizona's Painted Desert; Seymour called my dad to ask for permission and my dad said he'd always hoped I'd go into a nunnery, but eventually gave in. We celebrated the next day in Las Vegas with the local part of Seymour's extended family, and the day after that with the Fresno part of his extended family. And then we drove to Menlo Park, where a friend had promised to put us up until we found a place to live.

Except that friend was nowhere to be found. And that friend's yard was locked off by a gate, so we couldn't even park. And none of us used cell phones then, kids, so tracking the friend was not an option. We panicked, as we and our critters truly had no place to go.

Except.

Except H. He and his wife S. answered our frantic pay phone call and invited us to come stay with them as though it was the most natural thing two persons could do. Which, for them, it was; we were college friends with their son J. and his then-fiancee/now wife A. and had been to many gatherings at their community nexus of a home (S.'s only stipulation: the snakes had to stay in the van).

That's just the kind of person H. and his family were. Once we found our own place and settled in, H. & S. included us on camping trips to Burney Falls, where we cast lines alongside the wary ospreys on Bing Crosby's and Louis Armstrong's Gone Fishin' lake. We kids were part of each other's weddings, which took place four months apart and even used the same reception site. We went to H.'s & S.'s house for hootenannies (H. used to play in an Kingston Trio-like band), Super Bowls, and all sorts of smaller get togethers.

And then S. got sick; a few months after Iz was born, S. died. We were all devastated, H. most of all of course; he and S. had been together since they were teens. We processed our grief through music and long walks. H. would play his guitar for baby Iz, and I wouldn't be surprised to find our girl has the notes to Don't Think Twice It's Alright and Freight Train imprinted on her heart. For a while, until we didn't need to anymore, we met for a weekly jam session; Seymour (bass), H., his son J. (guitar) and another friend R. (another guitar) would roll through the favorites while Iz and I listened and we all healed.

H. met a new love, D., through group grief counseling, and they got married. We had another baby, Leo. We still got together from time to time, for Superbowls, and when five-year-old Iz belted out America the Beautiful at the top of her lungs at the hootenanny for H.'s 70th birthday.

And then we didn't see them so often. Because it wasn't always easy for us to visit houses like theirs with Leo, for many reasons. (H. & D. were always as kind and welcoming as ever.) But part of accepting autism means understanding that some expectations are not reasonable for your child -- and it's not the child's fault. It's just the way things are. And H. and D. understood that.

We saw them a few times over the years between. H. had a few health scares, and then a few more,  then recently went into the hospital and stayed there. (I love the nurses in the intensive units; they don't tell you not to cry, but they will tell you that if you keep crying you'll contaminate your gloves and gown and will need to change them and why would you want to go through all that bother when you could be sitting with your friend?) It was hard to see H. not want to be in such a state, but it was not hard to sit with him, because I loved him. And I was glad when he got to go home two days ago with hospice care, because that's what he did want.

We are all going to miss him, so much.


5.02.2014

Crime, Punishment, and a Toca Boca Event!

Bjorn gives Mali a personal demon of
an at-that-time unreleased TocaBoca app.
Hey locals, Toca Boca's co-founder and CEO Bjorn Jeffrey is in town tomorrow, giving a workshop at Community Gatepath! Details below, and you should go. Because Bjorn is a great guy, Toca Boca is a great apps company (I've even written guest posts about autism for them), and GatePath is a fantastic org. But before I give you the event details, I want to tell you a little story about Bjorn, and Mali.

(I can't believe I never told you this story.)

In 2011, Toca Boca apps were among my kids' very favorite iPad distractions (they continue to be much-beloved). Mali loved Toca Hair Salon. Leo loved Toca Tea Party. And I blogged about how much my kids loved those lovely, beautifully designed apps.

One day, in late 2011, I received an email from Mr. Jeffrey, letting me know that he was going to be in San Francisco, and would I care to meet up? I said I would. We planned to meet at the Ferry Building. I told my kids. They were jealous.

And then the day before the meetup, which happened to be my birthday, I got a call from Mali's school. I needed to come pick her up because she not only had punched another kid, but had informed the kid that any tattling would bring additional physical retribution (the kid tattled anyhow, and claimed asylum in the school office). The school didn't take kindly to premeditated assault among second graders, which I understood. They also suspended her for the next day, which I did not understand -- how is getting to miss school a punishment, again?

To add to the not-aversive nature of her "punishment": as I did not have a suspension-day sitter for Mali, so she got to come with me to meet Bjorn. Who was gracious and informative, and gave our girl all sorts of demos of yet-to-be-released apps like Toca Kitchen -- which Mali played with while Bjorn and I talked about the intentionally non-text-based, exploration- & play-oriented design of TocaBoca apps, and why their design approaches makes their apps so well-suited to both international and special needs markets.

Maybe the non-aversive approach to punishment worked after all, as two years later our girl has yet to have a repeat suspension. And I am in a position to tell you unequivocally: Bjorn is an excellent speaker and app demo giver, and you should go to his presentation. Here are the details:
Please join us for an incredible (and free!) presentation by Bjorn Jeffrey, Toca Boca CEO and Co-Founder

Saturday, May 3, 2014
10:00 am -- 12:00 p.m
Niall P. McCarthy Center for Children and Family
1764 Marco Polo Way, Burlingame, CA


Come learn from the world's leading digital toy developer:
  • Be inspired by Toca Boca's history and success
  • Learn about the insights and research that goes into creating Toca Boca's world leading apps
  • See demos and trial some of Toca Boca's top selling apps
Free fun giveaways to be presented to all participants and attendees will have a chance to win Toca Boca t-shirts, posters, and monster socks.

Childcare is available -- RSVP to indicate if you will be needing childcare to clocke@gatepath.com or 650-259-8544.

5.01.2014

Spring Break 2014

Spring break was two weeks ago, but, as happens every year, the slipstream of Autism Acceptance month is hard to escape -- whether speaking out on CBC radio against justifying the murders of autistic people like Leo, joining MomsRising.org autism tweetchats, talking with Yahoo! Tech and BabyCenter about autism, speaking out on KnowMore.tv about what I'd like people to know about Leo, guest blogging about autism and vaccines for my friend Sili, or co-producing TPGA's Autism Acceptance Month autistic interview series.

Those are the kinds of things that kept happening instead. But since I've been doing almost no journaling here, I do want to at least put up a quick photo record of a most excellent week.

The week started out with Mali getting Carotenemia, which you can see in the orange creases of her knuckles. I told her to stop eating 10 tangerines per day but would she listen? It is a benign and purely cosmetic condition. She was not terribly bothered and informed me that "at least you know I'm not going to get scurvy." True. I also know that tangerine season just ended. Sorry, Toots.
We also visited The Best Thai Restaurant in the World on our way down to San Diego. The manger has been working there since I was a teenager, and is still kind of confused about what happened to the baby I had when I was 20, whether that's Iz or not. Who is 15, but it was all a long time ago, so I generally just smile and surrender to the menu and have a beer. The curried clams are a favorite of Seymour's, I've preferred the garlic en choy (pak boong) for 25+ years.



Every morning in San Diego starts with a long walk. To the best coffee and croissants place. Though now instead of being woken by Leo, we sometimes have to wake him. Which is fantastic. For everyone. This adolescence thing, it is not so bad.

We ended up spending a significant amount of time at the mall. As half of us came down without our swim gear. We are not used to malls and figured they opened up at the same time as Target, roughly? But no. They open at the same time as restaurants open for lunch. So we waited and played footsie in these comforting cocoon chairs.
Iz required her own trip to the mall for her own bathing suit, because she is a more advanced teen than her brother and requires sleeping in even later, say, around the time school gets out for the day, ideally. She also requires acai yogurt bowls.
OK, fine, we were there for the beach. We went to the beach every damn day.
It was wonderful. This is La Jolla Cove.
Click to embiggen.

Mali is a newly minted Adventure Time fan. This is her beachgoing version of being Finn the Human.

Her beachgoing was quite impressive, really. She spent hours in really damn cold waves that Leo would only immerse himself in partially and for brief episodes, and for which Seymour required a wetsuit. I stayed on the beach on a towel and observed as I do not do cold water unless I am scuba diving in full gear.
We went to Balboa Park and visited the Japanese gardens, because there are lots of paths to follow and we all like paths. Seymour has long-simmering, currently dormant bonsai dreams, and spent much time communing with the local examples and giving the girls extended explainers.

My mom was there too, not sure why she's not in these photos. We stayed at her house and brought her back her dog, who had stayed with us for a few weeks and endeared himself to our entire city and who slept on our bed every night despite being told no. (Puppy pout is a real thing.)

My mom is always very patient with us invading her home and causing iDevices and laptops to sprout from every available electrical outlet and wanting to eat Roberto's burritos and rolled tacos for every meal even though she is an excellent cook who rarely gets to cook meals because cooking for one is no fun. We owe her a home-grilled steak dinner.

Leo loved the Japanese garden, by the way. Here he is communing with the Zen rock garden, with his clear pure voice. I love the songs he makes up. Though it appears Blogger does not embed video sound? Ack. Here's the Vine version.

Leo has also discovered that it is fun to latch onto people's shoulders while you walk, because then you don't have to put so much effort into getting places and especially into walking up hills. Iz is a good sport about such things, much better than I am. I do not like people hanging off my shoulders though I will let Leo do it because he is of my flesh. No one else, though. These are both new bathing outfits btw. Yay malls.
If I cannot prove my mom was there, I can prove I was, on the drive home at least. Do you know where I am, Geeks, do you? These are the Vasquez rocks. From Star Trek. They were awesome. I can die happy. Mali kept posing and saying "Mommy! I'm making Riker Face!"
These are some really damn fine bouldering/climbing rocks. We'll come back, as we were all wearing Crocs or Birkenstocks, and therefore ill-equipped. Which was a shame. Leo wanted to Go! Go! Go! and it was not to be. Next time. Though not in the summer, as it's a famed heat stroke locale.
And then Spring Break was over.
I hope you had a good spring break. I hope you had a good April. My April was good but it wrung me out of words. Good night.

4.25.2014

Please Stop Being "Understanding" When Autistic Kids Are Murdered

Robert Robinson. Photo: The StarPhoenix
No, this is not an age-progressed photo of my son Leo. This is a photo of Robert Robinson, a sixteen-year-old autistic teenager who was killed by his mother -- who then killed herself.

I have been too sick at heart to write about Robert's murder until now, because -- once again, and so predictably -- news outlets have framed the story around how hard things were for Robert's mother, how difficult it was for her to take care of him, and thus are perpetuating the awful message that murdering Robert was an understandable act. Once again the implication is that Robert's mother Angie, who could tell people what she was experiencing and could have walked away, was the victim; and that Robert, who relied wholly on Angie to communicate and advocate for him and who had no escape options, was ... his mother's trigger.

I am too distraught to write a full rant, because Leo practically is Robert Robinson, though a few years younger. So let me leave with you with a few critical points to cite when people side with murderers, not their autistic victims:
  • An innocent autistic person was murdered. There is no defending or justifying this action.
  • Loving mothers do not kill their children. If I read another story about a mother who "loved her autistic child so much" and "tried so hard" but then murdered that autistic child, I am going to throw my computer across the room.
  • Lack of services need to be discussed separately. Of course autistic people need more and better services, and so do their families. But lack of services do not justify murder, and reporters need to stop writing stories that make this lazy, dangerous connection.
  • We need to be aware of signs of caregiver fatigue and exhaustion. If parents are nearing the edge, that puts their kids in danger. Please be vigilant if you know a family that is showing signs of stress.
  • Parents approaching crisis can walk away. Even if you believe "no one else can care for my child," it is better for your autistic child to be with someone who will not kill them.
  • Behavior is communication. If an autistic child, teen, or adult is behaving in a way that appears aggressive or violent, there is likely a root issue, such as lack of communication options, illness, boredom, or sensory concerns. Please do everything you can to explore those possibilities.
Please note: Paula Durbin-Westby has put together a list of emergency resources for disabled people in danger, and for caregivers who feel they are nearing a breaking point.

4.22.2014

Lobbying My Congresswoman on Behalf of Autism and Vaccine Policies: If I Can Do It, You Can Too

At Congresswoman Jackie Speier's San Mateo office,
with staffer Samantha Roxas.
It's funny, really, that I've been doing in-person policy advocacy lately. Personality inventories usually recommend I live in a cave by myself, and avoid selling real estate or doing any kind of political lobbying. So the fact that I've been  lobbying on autism and vaccine policies anyhow demonstrates how much I care about both topics.

Which is why I went to Congresswoman Jackie Speier's office today and talked with staffers including Samantha Roxas. Well, not the only reason. Last month, when Shot@Life sent me to talk about global vaccine policies with Senators Boxers and Feinstein's teams, they also sent me to Congresswoman Anna Eshoo's office. Which was a great meeting! Except I live 200 feet inside Rep. Speier's district. So I wanted to have a chance to talk with my own Rep's team.

From my perspective, the meeting went well. I spend my days so deeply involved in autism and vaccine advocacy that it's sometimes hard to calibrate my information firehose appropriately. Fortunately the staffers were interested, and asked good questions.

First we talked about the re-authorization of the Combating Autism Act, which expires in September of this year. The CAA is a matter I view guardedly. It's not that I don't want more government funding to go towards autistic people; I'm just worried about how that funding is allocated. As my concerns align closely with those of the Autistic Self-Advocacy Network (ASAN), so I explained my concerns using the five talking points from ASAN's CAA memorandum:

1) Re-Balance the Autism Research Agenda to Include Research on Effective Services, and Adults

We need to focus on supporting the autistic people who are already here. My son is starting to use assistive technology to communicate, there are many autistic people whose unaddressed sensory needs interfere with daily living, we need better housing, education, employment. The CAA budget is too heavily focused on causation research.

2) Prioritize Funding for Autistic Adults

Most autistic people are not children; most autistic people are adults. And my own autistic son is already a teenager. We need to prioritize supports and resources for the autistic adults who are already here, who have always been here.

3) Transfer primary responsibility for management of the Interagency Autism Coordinating Committee (IACC) from the National Institutes of Health to the Administration on Intellectual and Developmental Disabilities (AIDD) within the Administration for Community Living (ACL)

Another way to focus less on causation research and more on supporting existing autistic people -- make the department administrating the IACC one already focused on the interests of autistic people, rather than one that tends to view autism as a disease and fund causation research.

4) Change the composition of the IACC to require that at least half of the public members be autistic people and to add representation by DOJ, NCD, HUD and other relevant service-oriented federal agencies.

There are more than enough qualified autistic individuals to serve on the IACC. Busting the myth that such individuals are rare, and they myth that individuals who are non-speaking or have multiple disabilities could not effectively serve, were particularly rewarding areas of discussion with Rep. Speier's staffers. (I recommended they review TPGA's current Autism Acceptance Month interview series.)

5) Change the name of the Combating Autism Act to end the use of stigmatizing language. 

Some might dismiss this as quibbling over semantics, but I disagree. Language matters -- it influences thinking and attitudes. I don't want the government to tell people they should combat my son, or my autistic friends. Autistic people themselves don't like the language, either, and have started a #StopCombatingMe social media campaign.




And then the meeting's focus shifted to my other priority, Global Vaccines. I told the staffers that I advocate for vaccines, in part, as penance for the harm the anti-vaccine autism contingent causes with regards to public health, global health, and autistic people like my son. We talked a bit about how it's reasonable to ask questions about vaccines and autism, but how frustrating it is when people won't accept the answer that vaccines do not cause autism. About how hard it is to unscare people who fell for lazy media vaccine-autism fear mongering, and how silly it is for anti-vaccine blowhard Jenny McCarthy to pretend she bears no responsibility for the current outbreaks of vaccine preventable disease.

And we also talked about why our congress should continue to support global vaccine initiatives:

1) It's the right thing to do

A child dies every 20 seconds from vaccine preventable disease. Emphasis on preventable. Vaccines are a low-cost and effective way for the US to continue its tradition of international goodwill and support, in the best way possible -- by helping to save lives.

2) Diseases like Polio are just a plane ride away

Vaccine uptake in our country has been reduced, mostly due to irresponsible stoking of false autism/vaccine concerns. All those unvaccinated kids have no protection against vaccine preventable disease -- as recent measles outbreaks have demonstrated. If we help eliminate vaccine-preventable diseases in other countries, that helps protect American children whose misinformed parents are putting them at risk.

3) It's cost effective

The cost of vaccinations are so, so much less than the cost of treating a person who has a vaccine-preventable disease -- it costs $20 to vaccinate a child against polio, pneumonia, measles, and diarrhea, but can cost $100 to treat a child who contracts those diseases.

The conversation ended with warm affirmatives all 'round and me unable to keep in a "yay!" which I am guessing is not how many congressional staff meetings conclude. Again, I am not a professional lobbyist. But I did feel I made a difference.

Please believe me: if I can lobby, you can, too. Shot@Life has Global Vaccine Advocacy Guidelines, ASAN has guidelines for joining its #StopCombatingMe campaign. You don't have to meet with anyone in person if you don't want to -- you can write, donate, tweet, call, and just plain agitate. So, what are you waiting for?

4.10.2014

Teh Busy: Quick Update, Long List

I swear to you that I am still here. It's just, teh busy, these last two months. So much so that I didn't even put up perfunctory posts in reaction to luminous BlogHer co-founder Lisa Stone mentioning me and this blog on CBS This Morning a few weeks ago. BAD BLOGGER. Maybe I'll talk about that when I give my BlogHer 10x10 talk in July!

Below is all the stuff I've been doing -- writing, interviews, talks, etc. What's not recorded in there is that Iz, now a sophomore in high school, is playing lacrosse and soccer, perseverating just a bit on makeup and bands, and is a better student than I ever was. Leo, seventh grader, is in the middle of a trial period for a dedicated AAC device, we're optimistic, plus he just had his annual IEP which was resoundingly positive -- last year was hard (seizure and other medical issues), this year is good. I don't know if it's puberty or just maturity that's got him in the current One Chill Dude phase, and I'm not taking it for granted, but I'm enjoying that he's so happy overall right now. Mali is still a fort-builder and a mythology lover, as befits a fourth grader. She is still the most fun ever, as anyone who hangs out with her can attest (still a button-pusher as well, though, watch out). We've started watching Adventure Time, which is surreal but quite awesome, and Leo likes it too.

I'll try to write a real entry soon! HONEST.  But here's the list, I'll slap up some photos below it.

April 2014

March 2014
I visited York Minster as well when I was in the UK.
Jonathan Strange and Mr. Norrell had just finished filming onsite!
I interviewed Roy Richard Grinker at the NAS Conference
Transcription is a perennial bugger hurdle, but will publish soon.
Such a thoughtful, articulate, and charming individual.
(Need to transcribe an interview with Ron & Cornelia Suskind too.
And write that Legoland post. Aaaaigh.)
We're headed back to San Diego in two days.
We were just there in February.
We love San Diego.
(And visiting my mom of course.)
My fellow TPGA editrixes really are the best people in the world.
This is from our UCSF talk last month,
and next month we'll be descending on IMFAR!
Love my happy geek crew. xoxox

4.08.2014

My Public Comments for Today's IACC Meeting

I missed watching the live videocast of today's Interagency Autism Coordinating Committee (IACC) meeting because Leo's (really good, details later) annual IEP was held at the same time. But as the IACC meetings are for advising on policy, and as they welcome public input both in person and submitted in writing, I submitted comments to be included in the official public meeting record.

I did this to counter the anti-vaccine autism zealots who would rather put other people's kids at risk from vaccine preventable disease than face the fact that autistic people have always been here. These angry denialist parents tend to mob the proceedings, so as to give their fringe perspectives disproportionate and on-the-record exposure. They need countering.

If you would like to provide reasonable perspectives to balance the belligerent torch-wavers for the IACC's next meeting in July, please send in comments or (even better) ask to give them in person. The meetings take place in Washington D.C. I suspect the IACC members get rather tired of listening to conspiracy theorists, and would like some legitimately helpful input from autistic advocates, parent advocates, and autism professionals.

Here's what I wrote:
Thank you for reading my comments today. My name is Shannon Rosa, and I am the parent of a thirteen-year-old, thoroughly wonderful, autistic young man who does best with 1:1 support. I believe it is the responsibility of all those involved in autism policy to work towards guaranteeing autistic people like my son the support they need to succeed in life, no matter their abilities.

For that reason, I would like to thank the IACC for the positive work it does in advising on autism policy. However, I'd like to speak out about what the IACC can do to help people like my son, and families like ours:

1) Focus on getting supports and resources to autistic people and their families. The CDC's new 1 in 68 numbers for autism prevalence are an excellent opportunity to reinforce the message that autistic people of all abilities have always been part of our society, and that we will all benefit if the proper autism resources are allotted -- whether for housing, employment, respite, education, health care, or therapies.

2) Focus on research that helps the autistic people who are already here. We need to know more about autism and sensory issues, autism and anxiety, autism and co-morbid medical issues, and so on. This should be a higher priority than research into causation.

3) Recognize the agency of autistic people, and include more of them on the IACC itself. I have spent many years working with and learning from autistic adults regarding what my son needs and how he experiences the world. While I support the involvement of parent advocates and autism professionals on the IACC, autistic people themselves should be the majority representation when it comes to advising about autism policy.

4) Finally, stop accommodating pseudoscience. I still keep seeing mentions of vaccine or mercury autism causation theory in the IACC proceedings. Such theories have been debunked repeatedly by legitimate research. Setting aside any time to discuss them is a waste of the IACC's resources, and does not help autistic people.

Thank you for your time,

Shannon Des Roches Rosa
Senior Editor, Thinking Person's Guide to Autism
For more on what the IACC does, and why it's so important, see my TPGA interview with IACC member Dr. Matthew Carey.

3.18.2014

Walking the Capitol Hill Walk for Life-Saving Vaccines

"There is no evidence to support a vaccine-autism link, and irrefutable evidence supports vaccination as one of the best ways to protect the health and lives of children all over the world."  

"In the context of global vaccine efforts, vaccine hesitancy makes no sense and rarely comes up." 

These two statements underscore why I speak out about the critical importance of vaccines. I've lived in a country and gone to school with people affected by polio. Trust me, no one who has the real-world experience of living in fear of vaccine-preventable diseases questions the necessity of vaccines.

So I wince, almost daily, at the harm done by vaccine denialists, in opening the gate for resurgences of preventable diseases like measles. And I wince again when I see anti-vaccine misinformation  spread by tiny but zealous factions within the autism communities, then blithely repeated by media outlets that value page views more than they do public health [shakes fist].

Anti-vaccine misinformation is a double whammy of dangerous ignorance: It makes people fear autistic people like my beloved son Leo, and it endangers the health and lives of children all over the world. So I counter that misinformation with my own double whammy: I speak out against anti-vaccine information and fight for good vaccine information whenever I can, as hard as I can.

Champions on Capitol Hill. Photo: Shot@Life
Which means I was thrilled to be invited to Washington DC by the United Nations Foundation's Shot@Life Campaign: as a UNF Global Issues Fellow to further the vaccine awareness work other bloggers and I did during Blogust, and as a Shot@Life Champion, trained on global vaccine awareness and issues and then unleashed on Capitol Hill with ninety-nine other Shot@Life champions to meet with our Senators and Congressional Representatives, in order to urge them to continue their support of life-saving global initiatives.

It was an life-changing experience, walking the halls of the Capitol Hill office buildings in the company of people who gave such incredible damns. Realizing, that, as a constituent, I have the same right any other constituent to have my say, directly to my members of Congress (or their staff). Which we did! We talked with staffers for both Dianne Feinstein and Barbara Boxer.

With James Hamos, Legislative Fellow, and
Megan Thompson, Legislative Assistant
Office of Senator Dianne Feinstein


And here is what we told the Senators' and Representatives' Congressional teams: Thank you for supporting global vaccine initiatives (because, thankfully, California and Silicon Valley were already on board). Let us know how we can support you -- and if you get blowback from your other constituents about diverting money internationally when we have so many domestic needs, we're here to provide you with information to address most any concern (and I also offered my services as a pro-vaccine autism parent). We need to keep funding international immunization programs for these reasons:
  • Humanitarian: A child dies every 20 seconds because they don't have access to life-saving vaccines, and 1 in 5 children lacks access to vaccines. Plus, immunizations save the lives of 2.5 million children, each year.
  • Public Safety: Measles infects 95% of the unvaccinated people who encounter a carrier; polio is only a plane ride away from returning to the United States. And babies can't be vaccinated in against measles in their first year of life. To keep ourselves safe, we must help eradicate vaccine-preventable disease in the rest of the world.
  • Cost-savings: The costs of eradicating smallpox are more than recouped by an annual savings of the one billion dollars that would have been needed for treatment, etc. And we're so close to eliminating polio! The current goal for a polio-free world is 2018, and it's reachable.


With Stacy Mintzer Herlihy, co-author of Your Baby's Best Shot
and Melody Butler of Nurses Who Vax
If the thought of meeting with a Congressional Representative scares you, don't let it. It's not that hard, as long as you're prepared. And were we ever prepared! Because when Shot@Life brought together 100 Champions from around the U.S. -- doctors, public health officials, nurses, parents, students -- they gave us a two-day crash course on global vaccines issues  (Storified for you to absorb in smaller bites), led by agencies supporting global vaccines initiatives. We had the privilege of hearing directly from representatives of the UN Foundation, Shot@Life, the World Health Organization (WHO), and GAVI Alliance reps, as well as polio survivor Dennis Ogbe. My favorite quote from the training was by pediatrician Dr. Margaret Fisher, who reminded everyone:

"When you choose not to immunize your child, you're playing Russian Roulette with your child."

And before the Champion Summit, Shot@Life invited a group of bloggers to participate in the UN Foundation Global Issues Fellowship, which was like our own mini TED conference on Conversations About Global Agencies, Public Health, Vaccines, and Communication: Challenges, Goals, Myths, and Next Steps. I felt so grateful and lucky to participate, and to spend time with the group pictured below. So grateful, in fact, that I've put together Storified versions of most of the talks below (just click on the "they talked about" links), so you, too, can share what we learned.
Some pretty damn amazing people. Recognize anyone?
Photo: Migdalia Rivera
Here are some of the write ups from the other Shot@Life/Global Issues Fellows (I'll add more as they come in):
Here are the wonderful people we ever-so-fortunate Global Issues Fellows got to hear from:

Ambassador Jimmy Kolker, former US Ambassador to Uganda and Burkina Faso, current Assistant Secretary for Global Affairs, US Dept of Health and Human Services, along with Peter Yeo, Vice President for Public Policy at the United Nations Foundation, spoke about health challenges around the globe -- include violence, and violence against women.
"Simple solutions to global violence against woman include having
a female police officer at the hospitals, as Namibia does."
Marie Claudet, a news producer for the Canadian Broadcasting Corporation, and Noam Levey, a National Health Reporter for the LA Times, spoke about the challenges and ethics of, and strategies for, reporting on global health issues like vaccines.
 
"Life expectancies in parts of US, like the Mississsippi Delta,
are dismal by global standards, due to lack of health care."

Dr. Asad Majeed Khan, Deputy Chief of Mission, Embassy of Pakistan graciously talked about the Pakistani government's unwavering commitment to eradicating polio within its borders, and the challenges it faces in doing so.
"When public confidence in vaccines is eroded,
trust restoration takes time."

Photo: Migdalia Rivera
Teddy Ruge is co-founder of Project Diaspora and Hive Colab, and the Lead Social Media Strategist for the World Bank. He talked about our obligation to "Create the Right Buzz" while supporting, not displacing, local development efforts.
"The merits of your campaign should be: real, local, current issues,
not making non-locals feel good."

Photo: Flickr/Mashable (cropped)
Sarah Craven is Washington DC representation office Director of the United Nations Population Fund, the "Agency that Makes Sex Boring." She talked about current crises in global women's and reproductive health -- and if her facts and stories don't outrage you, read them again.
"Half the girls in Ethiopia are married before their 15th birthday,
often by well-intentioned parents."

Photo: Chloe Jeffreys
Will Davis is the Director of the United Nations Development Programme, Washington Representation Office. He spoke about the United Nations' role in today's world, including why "Global goals should not be about rich countries preaching to poor countries."
"Peacekeeping is an attempt to get a country back on its feet after a crisis,
including jobs, and access to justice."

Photo: Chloe Jeffreys
Devi Ramachandran Thomas, Director of the United Nations Foundation's Shot@Life program, spoke about prioritizing global children's health, including reducing child mortality through vaccinations and also by combating malnutrition, diarrhea, and malaria.
"In Mozambique, many parents will not name their child until after they've been vaccinated."
Me, Devi (center), Lucrecer Braxton
The incredibly engaging Aaron Sherinian is the United Nations Foundation's Vice President of Communications and Public Relations. He spoke about translating online efforts into real world global engagement that can actually make a difference.
"At the end of the day, social media trends remind us that humans have a lot in common."
Photo: UN Foundation
Now, hopefully, you're wondering "How can I help? Tell me tell me!" And of course, the answers are "get involved!" (Shot@Life's site has an excellent advocacy toolkit) and "donate!" Donate your time, donate funds, donate your voice in spreading the messages above, especially about global vaccine issues. You can always donate to Shot@Life directly, but you can also manage your advocacy and outreach with the Shot@Life app, or even donate photos -- each worth $1 towards global vaccines -- through the Donate a Photo app.

If there is a single message you should be taking away from the onslaught of information above, it is this: You have so many options for helping to get life-saving vaccines to the children who need them. Pick an option, and get going!

----

Again, my sincere thanks to the UN Foundation and Shot@Life, and everyone who made this incredible experience possible -- including my companions in the Shot@Life Champions Summit and Global Issues Fellowship. Disclosure: The UN Foundation provided my travel & lodgings for the two events.

3.02.2014

Edinburgh Is My New Favorite City

I'd not been to Edinburgh since 1990, when I was 20 years old and pregnant, and my thoughtful studying abroad brother imported me for the UK for Spring Break to get my mind off being a 20 year old pregnant college student who was having a very difficult time deciding what to do about being a 20 year old pregnant college student.

I enjoyed that visit quite a lot, but I don't remember Edinburgh being quite so ... lively. And Sunny! And full of everything a easily pleased yet slightly snobbish and gustatorially-oriented person could ever want. It is my new favorite city. Look at the goods from my host friend's corner bakery! An endless selection, including Leo's favorite butter croissants. All freshly and perfectly baked, as top-notch as anything you might find in San Francisco (and the scones were better, natch).

The Edinburgh Farmers' Market, which is directly in the shadow of Edinburgh Castle, also beats anything like it in San Francisco or environs. The specialty meats alone (venisons, bison, Happiest Pigs in the World, and of course haggis; sorry, vegetarians) would make even the most casual carnivore sweat with anticipation. But then there were crepes. And oh the baked goods. And even the coffee. (Don't forget to follow the market on Twitter...)

The Farmer's Market's live music was also world-class. My damn iPhone was too full for video. Iz would have been pleased, I think -- she does love her music. Especially music that she finds first. And I doubt any friends back home would know these buskers. Too bad I'm on the front end of a business trip and so did not bring my family (my husband actually suggested I build out the front end of my UK business trip into a holiday, so I don't feel as bad as I might about not bringing the rest of the crew this time).
 
My hosts and I considered letting this turret in St. Cuthbert's, also in the shadow of The Castle. Who wouldn't. Right?
The weather was very very very very good, even atop the Castle where it was slightly windy. Everyone warned me UK weather at the end of February/start of March would be crap. But we experienced gloriously sunny, if chilly, days the entire weekend I stayed. Not to mention glorious views. Of ancientness. Everywhere. Ancient exists in California, but it is rarely so tangible and certainly not as omnipresent as it is in Edinburgh.

This is my obligatory Mon's Meg (a famous cannon) shot from the Castle. It is one of many, many, many military exhibits in the castle. My brother, who is a military historian as well as a Warner Brothers cartoons expert, gave me a comprehensive tour of those exhibits during our last visit, and as it wouldn't be the same without him, I did not visit those museums. However as there are very few words that rhyme with my name I rarely resist a shot (heh) like this one.

St. Margaret's Chapel, also part of the Castle, was built in the 12th century by King David I in honor of his mother. You have to love a boy who loves his mummy.

Most of the castle is not terribly accessible, though significant effort has been made to convert those parts that can be converted. I did like that they included touchable models with braille descriptions of some of important objects in the exhibits, such as the Sword of State (one of the Honours of Scotland, and part of the Crown Jewels exhibit). I also appreciated the affability of the very well informed docents. Did you know that Scottish kings often shared the throne if there were multiple eligible brothers, so that they did not kill each other over the crown? Robert the Bruce ended that era of reasonableness, though.

And, ho, geeks! On The Royal Mile below the Castle lies The World's End pub, so named because when it was founded, it was the last pub before the Edinburgh city wall, and anything outside the wall didn't matter to the snobs insde -- so the pub was literally considered The World's End.

Haggis, Neeps, and Tatties
Though I actually preferred the food and drink at the Tollbooth Tavern just lower on the Royal Mile. I did not get bonked on the head by the resident ghost, but I did find the perfect bitter but not too hoppy ale in The Flying Scotsman, and I am officially a haggis convert -- this plate of Haggis, Neeps (turnips), and Tatties (potatoes) is my new standard for comforting comfort food meals. Though I'm not sure where I'll find a good sheep's stomach to nibble on once I'm back home.
Back to the greatness that is Edinburgh -- my gracious, affable, brilliant, witty host and I did not have to walk more than a few short blocks from her street to find everything a person like me (and my husband) might want. Pehaps we will move here instead of San Francisco when our children leave home, because I would not mind living a stone's throw from a French deli that provides fresh goose rillette, a South African cafe that serves perfect coffee, and an Oxfam used book store (where we stocked up on several of the Horrible Histories titles that are not available in the US but which my host's children recommended as being just perfect for Mali and her similarly irreverent friends).

Crocuses!
I also wouldn't mind being greeted with carpets of purple crocuses, white snowdrops (which I'd only ever heard of from British children's literature), and miniature yellow daffodils everywhere we looked.
The last place we visited during my shorter-than-48-hour visit was Rosslyn Chapel. This picture does not do justice to the its 16th century elaborately carved sandstone gorgeousness. Which, apparently, has been restored to its former beauty in large part due to throngs of tourists who came to see it and brought their entry fees with them, after it was featured in The Da Vinci Code movie. Which I had not realized. If you are ever in the Edinburgh area, however, I recommend it. (the Chapel actually reminded me of the similar intricate sandstone carvings at the Cambodian temple of Banteay Srei.)

Edinburgh was such a delight that I occasionally wondered if my host had pulled a Potemkin Village on me. Then I started thinking that perhaps Iz should go to Edinburgh University so we really would have a reason to come visit again. So if you get the opportunity to visit Edinburgh? Do it.