12.29.2011

A Very Device-ive Holiday

Can you identify each of the four different devices our kids are using?

Holidays are blowing the top of my head off. Not necessarily a bad thing, especially as the kids are having a great time and Leo specifically is in a good space. But oh the backlog -- posts on apps, cases, and yes devices in the works. If I can ever find two moments to rub together!

Hope your wintry holidays are very fantastic.

12.26.2011

Get Your Loud Hands Out!

"Loud Hands: Autistic People, Speaking features essays, long and short, by Autistic authors writing on autism acceptance, neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands)."

I support the Loud Hands project whole-heartedly, and hope you will too.
More information at TPGA or the Loud Hands Project Page.

12.21.2011

Thinking Person's Guide to Autism: A Real Book

Thinking Person's Guide to Autism is a real book. A real real book.

One you can order right now, and tell all your friends to order right now.

One that can hopefully make a positive difference for people with autism of any age, and their families.

(One that I wish hadn't nearly killed Jen Myers during its production process -- she deserves to be waited on by angels and noble djinni for a few weeks, trust me).

One that I really, really wish I'd had when Leo was first diagnosed with autism, so I could leapfrog all the tangents and charlatans and bad advice and bad teachers and could start out at the beginning of this autism parenting learning curve strong, aware, and hopeful, instead of afraid, confused, and depressed.

One  that -- in a move so surreal and wonderful as to near the unimaginable -- cool-as-hell investigative reporter Steve Silberman named his Book of the Year.  Book of the Year.

If you had told me Mr. Silberman might write such things years ago when I was reading his seminal, exactly-ten-years-old Wired article The Geek Syndrome, or even eighteen months ago when I discovered he was talking about revisiting and revising that article into a book, I would have scoffed. With annoyance and sincerity.

But then, that was before I had the honor of working with four fantastic TPGA co-editors and fifty-three marvelous TPGA book contributors. I do overuse the term alchemy, but alchemy is what -- and why this -- happened. And we all have our own reasons for contributing to this project. Mine is right here:

Leo having the best time ever at Hayes Valley Playground yesterday
It's rare to find folks from outside the autism communities who not only want to understand why a book like TPGA matters, but who are willing to use a sizable media megaphone to broadcast its message. Thank you, Steve, for caring so damn much and for doing the right thing.

12.15.2011

Locals: Support Family Portraits for Underrepresented Families

Hey locals! A local not-for-profit photographers' collective that commits a portion of their photographic profits to helping underrepresented families capture, preserve, and share their memories is having a free BBQ and holiday family photoshoot at Hoover Park, Redwood City this Saturday December 17 from 11-2pm. They are offering a free professional portrait session and framed ready-to-hang print.

They ask only that folks bring a food item or a $10 raffle item or gift card for the families in need. There will be a videographer on hand filmingthe  promo, so please show your support!

Thai Chu from AliveByShooting.com leads the collective and is also a friend of Leo's; here are some wonderful portraits he's taken of Leo; these are the quality of portraits that will be available:




The photographer's collective also "collects and distribute old digital cameras to families through a collaboration with nonprofit agencies in developing nations. Currently, we are working with Islas de Las Hermanas and Peace Corps on the island of Ometepe in Nicaragua. This island of 30,000 is one of the poorest communities in Nicaragua, and none of the families in the communities we work with own cameras or have even seen themselves outside of a mirror. With our digital exchange, when their memory cards are full, their prints are developed in the US, shipped, and distributed free of charge. Please donate your digital cameras, accessories, and bilingual manuals by contacting [Thai]."

12.13.2011

What Would You Say to This Misguided Autism Parent?

Just came across this. Sigh. She seems like a reasonable, passionate sort -- but is totally invested in biomedical/DAN! autism chicanery. What advice would you have? How would you approach her?
My son has been back on gluten (wheat and related grains) for five days now. His behavior hasn't taken any noticeable nose dives, no sir. Quite the opposite. On Friday he went up to our friend Mary, and announced "Dat's Mary!" Everyone in the room was shocked and pleased. That same day his speech therapist told me he'd had his best session in weeks.
And (apologies, gentle readers) his bowel movements haven't been liquified, either. Those little logs are still rolling along. I am hopeful, oh so hopeful, that we can eventually phase in dairy, chocolate, citrus, peanuts, and sugar.

Now, does all this mean that the past nine months of special diets and vitamin supplements and dietary enzymes have been for naught? Hell no.

I firmly believe that autism arises from multiple causes: hard-wired genes, the environment (including lead poisoning), vaccines, and/or diet. But, as of today, there is no way to quickly pinpoint how a child became autistic. One of the only things a parent can do, can control, is dietary trial and error.

Hence the elimination diet. It was and remains complicated, but it is in no way harmful to him. Not a bit. As in, there was no harm in trying it, and now we may get to be fairly certain that diet is not a factor in his case.

In addition, his GI tract had been seriously messed up by round after round after round after round of antibiotics--the poor boy had non-stop squirts. Putting him on a bland diet has given his little innards the resting period they needed to rebuild themselves. They seem to be able to do their job just fine these days, although they are still getting a little assistance from probiotics (heartily endorsed by his mainstream pediatrician, BTW).

Many autism professionals, particularly those in the ABA field, are skeptical when it comes to elimination diets. Some are outright hostile, and will make concerted efforts to dissuade parents from trying dietary approaches. Fuck them. They're not the parents. They don't have to live with the child; they won't be there in ten years.

Again, there is no harm in trying an elimination diet, other than inconvenience on the parents' part (note that inconvenience does not equal impossibility). For some children, this diet makes an incredible difference. For others, not a whit. But wouldn't you rather know?

Ways to get started:
  • Read Karyn Seroussi's Unraveling the Mystery of Autism...
    Novelized account of her son's recovery due to a special diet; a bit shrill, but compelling nonetheless.

  • Read Lisa Lewis's Special Diets for Special Kids
    Causation, theories, recipes.

  • Find Yourself a Good DAN Doctor
    Ask for recommendations from current and former patients. Some of these practitioners should be canonized, but I have heard of others who are costly bumblers.
...

...

...

Well?

Now here's the thing. I wrote this post. Seven and a half years ago. One year after Leo's diagnosis. Because I was misguided. Because I listened to the wrong people (e.g., see list above). Because those people were the loudest voices in the autism parent community. Because good information wasn't available. Because a book like our new Thinking Person's Guide to Autism wasn't available.

But ... our book will be available, in just a few days. We hope it will make a difference to anyone new autism. We appreciate your patience, and hope you will help spread the word about our book, and why it's so important. Thank you.

12.07.2011

Vanquish the Forces of Autism Evil! Declare Your #AutismPride!

When I hear about yet another dangerously misinformed autism parent killing their child because of  autism fears, I literally fall to my knees with grief. What kind of world do we live in, if people can't bear the thought of having a child like my bubbly, affectionate, exuberant Leo? In which fears about the challenges and expense of caring for an autistic child snowball into murder? In which people are so unaware of the vibrant diversity of Autistic adult experiences that they view the possibility of life-long dependence -- which may very well be my son's future, and which does not exclude a fulfilling, happy, and social life -- with soul-destroying horror? In which autism is declared the catalyst for a mentally ill mother's unforgivable act?

The answer is that we live in a world where autism negativity and fear mongering are rampant, and I blame the media. Squarely. The Internet overflows with positive, respectful autism examples and role models that in no way downplay the difficulties that can come with being Autistic, but acceptance and even pluck don't grab eyeballs the way that tragedy does. This needs to change. The stakes are too high; we need balance in media portrayals of the autism experience.

I also blame autism organizations and websites like Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds, which have made unilateral demonization of autism their mission; which do no outreach whatsoever based on building positive supports and communities; and which use calculated cult-like "us or them" mindsets, attack dog techniques, misinformation, and censorship practices to keep their almost exclusively autism parent and grandparent faithfuls' righteous indignation and self-pity at a roiling boil.

It doesn't matter how much you love someone with autism -- if you continuously and publicly declare them damaged goods, you are hurting them. And their peers. And telling everyone else it is acceptable to hurt Autistics.

Countering negative autism attitudes and the pervasive media influence that shapes them has been a driving force behind Thinking Person's Guide to Autism. Providing positive role modeling and information is one of the primary reasons our project exists. And, as successful as the website and Facebook communities are, this latest tragedy makes me frantic to get our TPGA book out (I'm marking up the proof right now, if there are no more hiccups with the publication process and thanks to the superhero manuscript powers of Jen Myers, it should be available in one week). I really, truly hope our book will make a difference.

Information is power. We need to use our own power -- our social media voices -- to get out better autism information, and influence the media towards balanced autism portrayals. I hope you'll help spread the word about TPGA, ASAN, and other adamant autism advocacy orgs. If you're on Twitter or Facebook, please take the time to make a public statement of Autism Pride or #AutismPride. Your message might make all the difference to a desperate autism-fearing parent like Stephanie Rochester.

video

Leo at age two, around the time of his provisional autism diagnosis, and 100% adorable.

Please also read Emily Willingham's post Autism is not the monster. Postpartum depression is, and it has some help.

12.06.2011

Launching now: MyAutismTeam & ASF's Recipe4Hope

Two autism efforts worth your eyeballs (and one that I hope will open your wallet), with a caveat coda:

MyAutismTeam

We've needed an autism social network/Yelp! hybrid like MyAutismTeam (www.MyAutismTeam.com) for just about ever. So I'm pleased that it's finally here:
From the press release: MyHealthTeams today announced the launch of MyAutismTeam, its flagship social network for parents of children on the autism spectrum. MyAutismTeam is the first social network specifically for parents of children with autism, making it easy to connect with others who have had similar experiences. The network is a Facebook-meets-Yelp style place for parents to share recommendations of local providers, openly discuss issues, share tips, and gain access to local services that they may not have otherwise discovered on their own. Since the summer, the site has rapidly grown from 30 to over 12,500 members, underlying the growing need of parents seeking support and an easy way to find the team of providers that best meets the needs of their children.
I encourage you to explore the site, and then send the team feedback about your experience as well as what you'd like to see in the future.

Autism Science Foundation's Recipe4Hope

I admire the Autism Science Foundation's dedication to and streamlined effectivenes in "funding outstanding science," so I encourage you to participate in their December fundraising drive, Recipe4Hope:

It takes lots of snow, and some helping hands, to build a snowman. It also takes all of us, working together, to support the research needed to understand autism.
Your donation to the Autism Science Foundation, combined with those from families around the world, will snowball into lasting hope for children, teens and adults with autism.

Every dollar you give to ASF’s Recipe4Hope campaign goes directly to fund pre- and post-doctoral autism research fellowships to encourage the brightest young scientists to devote their careers to autism research.

By donating you are fueling scientists’ discoveries into the causes and treatments of autism. You are giving parents and teachers new ways to change the lives of children, teens and adults with autism. Through a gift to ASF, together, we are mixing up a recipe for hope.
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I think both of these efforts have the potential to benefit Autistics and their families. And I would also like to see each of these agencies include Autistics (plural) on their boards or in official advisory capacities. Autistics have autism insights and investments that even parents, partners, or family members couldn't possibly share, and the range of those autism experiences cannot be represented by a single Autistic individual.

These organizations have power and influence and the ability to shape future policy, attitudes, and opportunities for Autistics and their community -- and so could only benefit from heeding the self-advocate mantra "Nothing about us without us."

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Disclosures: I have consulted with MyAutismTeam on two occasions, and have been the recipient of an IMFAR travel grant from the Autism Science Foundation.

12.05.2011

A Critical Flu Season Q&A

December 4 - 10 is National Influenza Vaccination Week. I was asked to participate in a conference call hosted by Every Child by Two (www.ecbt.org) and Families Fighting Flu (www.familiesfightingflu.org), to help spread the word about correct and helpful flu vaccine information. The call featured:
  • Dr. William Schaffner, a renowned flu expert and Chairman of the Department of Preventive Medicine from Vanderbilt University School of Medicine and current president of the National Foundation for Infectious Diseases; and 
  • Jennifer Lastinger, a mother of four who lost her young daughter to the flu and who as a results is now a founding member of Families Fighting Flu and a passionate advocate for flu vaccination.
Both Ms. Lastinger and Dr. Schaffner spoke at length -- Dr. Scaffner about the most current information and recommendations for flu vaccines, and Ms. Lastinger courageously shared the story of losing her perfectly healthy daughter to influenza. I will be reporting on that section of the call at BlogHer. But the call also featured a lengthy Q&A, in which I and several other participants were able to query Ms. Lastinger and Dr. Schaffner directly, and that is what follows -- absolutely critical reading for anyone concerned about keeping their children and themselves healthy.

A thread that ran through the Q&A was how to counter the harm caused by vaccine opponents and misinformation. Jennifer Lastinger's response was impassioned:
I get very frustrated with a lot of the arguments [against vaccination]. The bottom argument is, do you want your your children alive? YES!

I fully believe vaccination would have kept my daughter here with me, so that's as simple as I can get.
Here is the remainder of the Q&A:

Shannon Rosa: Who cannot receive the flu vaccine?

Dr. Shaffner: There are some people who cannot be vaccinated or who respond poorly to vaccines, but really the only group in which flu vaccines are medically contraindicated is those with a genuine allergy to eggs. But even that group has been narrowed down to only those who really cannot eat eggs at all. Beyond that, as we get older -- here's the paradox -- senior citizens are the ones who tend to get the most complications, but because their immune systems aren't as robust as they used to be, and they also tend to not respond to immunizations as well as younger people. So they clearly should be vaccinated -- but all of us who have contact with them should also be vaccinated.

And then of course there younger persons who for reasons of immunodeficiency or because they're taking immune-suppressing medication do not respond to the vaccines as strongly either -- and therefore everyone who has contact with them needs to get immunized for influenza, that important "cocoon" of protection.

Trish Parnell from www.PKids.org: There were some recent official concerns regarding the intradermal flu vaccine injection, can you tell us what happened?


Dr. Schaffner: The FDA discovered that some pharmacies were using the intradermal "jet" injector with the regular flu vaccine -- and that combination is not licensed, it hasn't been tested. So in the interests of being overly cautious, they recommended that people get re-immunized. But after more thought they realized that re-immunization wasn't necessary.

Vincent Iannelli, Pediatrics.About.Com: In my area of Texas, half the pulmonologists say it's OK to use the FluMist [nasal spray] vaccine in kids with stable asthma, and the other half say it's not OK.

Dr. Schaffner: The FDA and the CDC recommend that it not be used in children with asthma because in rare occasions it can provoke a broncho-spastic response. I do know that very astute pediatric pulmonologists will use the FluMist vaccine in children whose conditions are very stable.

So then the question is, why would these doctors be more interested in using the FluMist version of the influenza vaccine in children? The answer is that for the A strains of influenza, the nasal spray provides more immunity than the injectable vaccines, and it's also a little bit broader, more likely to provide protection against those mutant variations of the flu. Though that's not a big issue so far this year.

Dr. Iannelli: We're also seeing some parents who are skeptical of the FluMist vaccine because they say it's a live virus vaccine -- though my kids all got FluMist because they don't like shots.


Dr. Schaffner: The pediatricians in our area are definitely moving to FluMist because it's quicker and easier to administer in a busy office practice, and also because the kids seem to like it better than the inoculation.

The live virus in FluMist is a live attenuated strain. So it's been tamed in the lab to be what's called "cold sensitive." What that means is that if we take the temperature of any of us at the back of our nasopharynx, it's a degree and a half cooler than it is in our lungs -- unsurprising as our nose and throat are exposed to air. The virus can only multiply at that cooler temperature; it cannot multiply in our lungs or cause any mischief there. It may cause, just for a day or two, a little bit of a scratchy throat, and in some people a little bit of nasal discharge. But that's it. It cannot cause influenza.

Ashley Shelby with the Moms Who Vax blog momswhovax.blogspot.com: I've been hearing from parents who have had nurses or physician's assistants wait until the pediatrician leaves the room, and then discourage them from getting the flu vaccine. Have you heard about this, are there safeguards in place, and what can parents do about it?

Dr. Schaffner: I'm not shocked, because within medical centers all around the country -- as we try to persuade everyone who works in such places to be vaccinated -- it paradoxically turns out that our nurses are the group most wary of immunization. Also the myth that you can get flu from the flu vaccine is most common among nurses. And their opinion is often extremely persuasive. So we're working hard not just to persuade them to get immunized but to become immunization advocates.

If you encounter nurses who have misinformation about vaccines, I would say to parents: be adamant! Insist on vaccination. If you have trouble, ask for the doctor.

Lara Zibner, pediatric emergency specialist, Author of If Your Kid Eats This Book, Everything Will Still Be Okay, writer for Parenting Magazine: Are there currently any reimbursement issues with the flu vaccine?


Dr. Schaffner: There aren't any problems with insurance and flu vaccines in the U.S. When it comes to influenza vaccines, it's difficult to find a child who isn't covered either by their private insurance, or by Vaccines for Children, which provides no-cost immunizations for children whose families are not able to pay for them. Also pharmacies like Walgreens often have programs that offer free vaccines to people in underserved communities.

Melody from Nurses Who Vaccinate (www.facebook.com/NursesWhoVaccinate): What is the best point in pregnancy for expectant mothers to receive the influenza vaccine, to allow for optimal results for both the mother and the unborn child, and create the most prolonged protection?


Dr. Schaffner: At any time during pregnancy. Initially when the AICP -- the Advisory Committee on Immunization Practices -- recommended second and third trimester only, but then a few years later along with their colleagues in ACOG, the American College of Obstetricians and Gynecologists, they reevaluated it and said that when you're pregnant and in the doctor's office is the time to do it.

Natasha Burgert: Private Pediatrician in Kansas City, blogger at kckidsdoc.com: I have a very Internet-savvy patient population who keep bringing to my attention a recent Lancet article from late October with the claim that the influenza vaccine may not be as protective as we thought it was. That was not my interpretation after reading the paper myself, but I'm wondering if you're familiar with the paper and what your comments would be.

Dr. Schaffner: What they did in a very rigorous way is summarize what we already knew. The influenza vaccine has limitations. I like to say that it's a good vaccine, it's not a great vaccine -- in the sense that if the influenza virus changes, we haven't matched it up exactly. Also, there are individuals in our society who don't respond optimally to influenza vaccines. We need a new one, a better one. The lights are definitely on in the research labs at night as people are trying to provide a better vaccine. Some of the innovations -- the intradermal vaccine, the high-dose vaccine that's now available for people age 65 and older -- are products of that research, as is the nasal spray variant.

There are adjuvanted vaccines that are licensed in Europe but not the U.S., and there are many people working on the Holy Grail of vaccines -- the universal flu vaccine that would allow us to get our flu shots like we do our tetanus shots -- once every ten years. The director of the NIH hopes there will be one ready for testing in 2014.

Until that happens, we need to use our "good" vaccine to its best advantage. It will protect many people against illness, it will protect against complications of pneumonia and hospitalization, and it will protect against  deaths. It can't protect against all of them, but protecting against some of those things is the current good, while we hope and wait for perfection down the road.

Shannon (again): I keep up on anti-vaccine literature, and one myth I keep seeing is that of "virus shedding," of people who get vaccinated for the flu then infecting other people.


Dr. Schaffner: If you get any of the injectable vaccines, not only is it a killed vaccine but it is broken up into tiny little pieces and can't reassemble, so it can't become a new virus in your body and you can't shed it. The nasal spray vaccine is a live attenuated vaccine, but it just goes in your nose and the studies show that it is not spread to any people roundabout, so you don't have to worry about that either.

Christine Vara, Shot of Prevention: The universal influenza vaccination recommendations have been in effect for two years, what has the uptake been like?

Dr. Schaffner: We now have a universal recommendation that everyone who comes to a clinic, hospital, pharmacy; everyone should be vaccinated -- not just to keep themselves healthy, but so they don't transmit the virus to others. The more people we get vaccinated, the more likely it is that we will reduce transmission in and protect our communities.

Amy Pisani from Every Child by Two: We hear a lot about the safety of influenza and people questioning that because it's new every year. I wonder if you could talk a little bit about how the basic strain of the vaccine has already been tested and has such a long profile, and how they achieve such a quick turnaround time each year.

Dr. Schaffner: The influenza vaccine is the most used vaccine, it's given in the millions upon millions around the world every year; the CDC monitors its safety like a hawk. It's an extraordinarily safe vaccine. The FDA, although it licenses a new variant of the vaccine every year, has all the safety history of the basic construct of the vaccine in mind. This year in the U.S. we will give more than 120 million doses of the vaccine, the safey profile does not change -- it continues to be extraordinarily safe.

Amy Pisani: To clarify for a prior question: You said that some people don't respond optimally to the flu vacine. You're not talking about a reaction, but rather than they don't realize their body is not building up the antibodies, correct?

Dr. Schaffner: Correct. Some people's bodies are not capable of responding and creating those antibodies that will protect them against influenza. They're too frail, or they are immunodeficient, or they are taking immune suppressant medications that prevents their body from responding optimally, from creating the prevention that the vaccine is designed to produce.

And as lay people we use the word "flu" rather casually, a lot of people mistakenly think a bad cold is the flu. But when you get influenza, and you've had the vaccine, your illness will be milder, and you're less likely to have complications like pneumonia, hospitalization, or death.

Christine Vara: Jen, could you elaborate on Emily's Law?

Jennifer Lastinger: My husband Joe was really passionate about getting the word out [about the real-world consequences of not getting vaccinated for vaccine-preventable disease], especially through schools -- we felt the schools were the key to getting kids vaccinated. We worked with a local senator who helped us pass the law a couple of years ago, and now school websites in Texas have to post information during flu season about the flu, how to prevent it, where to get shots, and how to keep your kids healthy.

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In case you are unfamiliar with how dramatically misinformed vaccine opponents are and why ongoing efforts to communicate helpful, correct vaccine information are so necessary, consider the excerpts from the Up Your Nose post by AoA's Cathy Jameson:

  • "...we were recently exposed to some kids who had received the Flumist [sic] vaccine.  Hours and hours and hours of contact, play time, meal time and chit chat occurred before I found out those children opted to have the live flu virus jammed up their nostrils earlier in the day."
  • "…when people get live virus vaccinations but then don’t quarantine themselves while the live virus sheds, other people are at risk."
  • "...Three days later my five-year old came down with her flu-like symptoms.  She was the third to get pummeled getting hit hard with the aches, chills and a very high fever.  Coming home from school very distraught that day, she told me that a classmate of hers missed the morning portion of school to get his flu shot.  In the throes of her high fever she burst into tears, “Mommy, why’d they go and do that?”  My typical son listened to this sad story and announced through his horrible wheezing and coughing, “I wish the flu shot had never been invented.”"
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Additional Flu information resources:

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