Vaccine Advocates: Don't Discriminate Against My Autistic Son

Image: a fully vaccinated autistic teen boy
running towards the camera
in a bright orange sandstone canyon

Public opinion has turned, sharply and loudly, in favor of supporting vaccines. Yay! It took an outbreak of measles at Disneyland for it to happen. Boo! (Your grandmother might have survived her measles, but for others it can be fatal.)

But even though formerly wishy washy types are now joining the previously silent pro-vaccine majority in getting righteously riled about the very real harm from anti-vaccine rhetoric, there's still one part of the argument that needs to change. That I'm asking you to change. Please:

Don't just say: "Vaccines don't cause autism" 

Please say this instead: "Autistic people have always been here. Vaccines don't cause autism"

Simply saying "vaccines don't cause autism" implies that autistic people like my very awesome teenage son Leo should be feared. Which is a really, really hurtful message.  One I'm asking you to help counter. Again, please.

Unless we push back against negative public messages about autistic people -- negative ideas the "autism is vaccine damage" science denialists are largely responsible for and continue to promote -- then the world will continue to be an unfriendly place for Leo and his autistic friends and spectrum-mates. It doesn't have to be that way. As Anne Theriault writes:

"The debate about vaccination should be autism-inclusive, and that means re-evaluating the way we talk about autism and vaccines. Because while it’s great to raise a happy healthy kid, you can do that without turning them into an anti-autism bigot."

Note that I don't hold anti-vaxxers entirely responsible for their initial fall down the misinformation rabbit hole. I blame the media for detonating autism-vaccine fears with its years-long, largely uncontested coverage of Andrew Wakefield's infamous "MMR jab causes autism" article. The article has since been retracted, along with Wakefield's medical license and any shreds of credibility, but even so the media continued to insist on the false balance of "two sides" for years. Even though one side was science and the other was ... Jenny McCarthy's "mommy instinct." (Note that Jenny McCarthy herself is suspiciously silent despite years of fanning autism-vaccine flames for fun and profit.)

Yet I can see why parents who stumbled across the wrong information after their kids were first diagnosed with autism might be confused about who to trust, because I know what it's like to be a scared, misinformed anti-vaxxer. I'm not proud to have once considered my sweet Leo "damaged" because I believed the cure-hawkers who had little interest in Leo's welfare but vested interest in the contents of my wallet. Guilt and anger over being duped when Leo and I both needed so much post-autism diagnosis support is part of what drives my advocacy work now.

So I have some empathy for anti-vaxxers. I believe, to the best of our abilities (including the ability to resist punching our screens), we should remember that they're human too, and ask them what their questions are, and try to answer those questions. People who knew I was misguided and misinformed but who nonetheless listened to my fears, and talked me through them, helped me along my path to recognizing vaccine-autism pseudoscience for what it is: total BS that not only degrades my son but derails autism conversations into causation, when those conversations should be about rights, accommodations, and support.

I won't stop countering anti-vaxxers efforts to dehumanize Leo and autistic people like him. I want a better, accepting, autism-friendly world for my dude. He and his people have always been here: Science says so, historical researchers say so, and very soon Wired reporter and NeuroTribes author Steve Silberman will say so, too. Leo and his tribe deserve better.
 
Please, please help spread the pro-vaccine message in an autistic-positive way. And if you need more ammo for your autism-supporting vaccine advocacy, follow these links:

• Don't Use My Autistic Son as a Reason Not to Vaccinate: My interview at CafeMom:
  thestir.cafemom.com/big_kid/178084/child_has_autism_still_vaccinates
• I’m Autistic, And Believe Me, It’s A Lot Better Than Measles. Sarah Kurchak, at Medium.com:
  medium.com/the-archipelago/im-autistic-and-believe-me-its-a-lot-better-than-measles-78cb039f4bea
• Busting Autism-Vaccine Myths While Supporting Autistic People: My Voices for Vaccines talk:
  www.thinkingautismguide.com/2014/07/busting-anti-vaccine-myths-while.html
• My autism-vaccine mythbusting Pinterest page:
  www.pinterest.com/shannonrosaftw/busting-vaccine-autism-myths/

Do report back and let me know how it goes.

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):

• Dresden Shumaker at Creating Motherhood: Revolutionary Optimists: Watch an Inspiring Clip
• Caryn Payzant at The MidLife Guru: What Is a Blogger Anyway (And Why Do They Matter?)
• Ellen Seidman at Parents.com: Scary Vaccine Realities You Can't Argue With
and at Love That Max: Because We Fight for Kids Who Can't Fight for Themselves

• Sili Recio at My Mamihood: He Deserved a Shot
• Dresden Shumaker at Creating Motherhood: Almost Five
• Chloe Jeffreys at Chloe of the Mountain: Chloe Goes to Washington

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.

When Advocacy Means Taking It On the Chin

One of the most painful parts of any kind of advocacy work, for me, is having to call out a person who just doesn't get it (just doesn't get it yet, one would hope). It's even harder when that person is a beloved community member. But ... that doesn't mean they can't stumble, and badly. That happened yesterday when Rob Gorski of Lost and Tired published his autism opinion piece Autism is NOT one size fits all, in which he attempted to call for community but actually ended up reinforcing some fairly harmful stereotypes about people with autism, as well as divisions between autism and Asperger's. Which Emily Willingham called him on, and rightfully so.

Thing is, it's completely fair to say that my son's experience as a non-conversational person with intense autism is not the same as those of Aspergians like Alex Plank or Rudy Simone. We should absolutely be true to our own experiences, and to that end I implore you to read Kyra Anderson's brilliant meditation on autism parenting and autism diversity and inclusivity and open dialogue, Bring Everyone Out.

But it is rarely helpful to make those differences dividing lines or points of contention, because focusing on them obscures a critical commonality: every last person with autism or Asperger's -- no matter their node on the spectrum, no matter how "high functioning" you perceive them as being or whether you think they can "pass" -- has that diagnosis because of intense challenges in at least one area, usually more. I recommend reading Steve Silberman's recently published interview with Ari Ne'eman, specifically the passage:

"Not too long ago, a colleague commented that I should be proud for being so nearly “indistinguishable from my peers.” Only in the autism community would anyone consider that a compliment. Despite the good intentions behind the remark, I felt a profound sense of hate and disgust motivating it — not of me as an individual, but of the person I was growing up, and of the person I still am, hidden underneath layers of mannerisms and coping strategies and other social sleights of hand. Those kinds of statements define our worth as human beings by how well we do looking like people whom we’re not. No one should have to spend their life hiding who they are."

Autism and Asperger's are the same universe. Anyone who thinks differently has not spent enough time participating in the wider autism community.

The real issue is that Rob is seen by many as a role model for autism parenting -- and if his opinion has influence, and that opinion is actually damaging to autism communities rather than constructive, then we can't stand by and excuse him because of the separate issue of his personal life being so stressful. That's the hard truth of real advocacy, and it sucks.

I think we all empathize with Rob, and we want to support him and his family the best we can -- to that end, we have featured his writing on Thinking Person's Guide to Autism, and I encourage you to visit the Move the Gorskis campaign page.

I don't envy Emily for the blowback she's received for being willing to call Rob out -- his readers are very protective of him, which is understandable. Their emotional investment, and the fact that even deserved criticism can feel like an attack, makes it hard to accept the fact that his opinion piece, though heartfelt, was badly misguided.

The TPGA Dialogues Discussed, Part 2

I replied again to the TPGA Dialogues discussion continuing at Julia Roberts's Support for Special Needs, because there's still some not getting it going on. While it is against my non-confrontational nature to get in the middle of such things, this is not about me -- this is about doing the right thing even when it's not easy.

While I don't doubt that Julia will post my comment, those comments are moderated and it might take a bit for this to appear.

---

Apologies for the delay in replying -- beyond busy these past ten days though I've been thinking about this the whole time, because it's so damn important.

I am all for civil disagreement. I crave it. Anything else is an aversive and makes me wince.

But I also recognize that it is unreasonable to expect people who are oppressed to be civil when discussing that oppression with the people who are oppressing them. We parents who do not ourselves have/share our kids' disabilities know too well how pissed we get when folks treat us and our kids badly, especially when they do so from behind a shield of good intentions. Do we really want to behave that same way towards people who know what it's like to be our kids, and who (in the case of every last adult with autism who wrote for the Dialogues) work so hard to make life better for our kids/people with disabilities?

If we were parenting children of a different sexual orientation or race, I'm guessing very few of us would dismiss the feelings or rights of representatives from our children's community, or get publicly defensive if we were called out for writing something offensive to them if we did so out of ignorance rather than malice. We would listen and learn rather than protest because those communities have established, recognized advocacy movements, and have changed the way most of us think -- to the point where folks who publicly oppose racial equality or LGBT rights look like total assholes.

The rights matters discussed in the Dialogues are no different, but the discussion is younger, and while the Disability Rights movement is long-standing, the Autistic Self-Advocacy movement is just starting. Do we really want to be the opposing assholes cited in the history books? If we aren't ready for, don't have the energy to, aren't able to help, or aren't able to tolerate the unpleasantness that comes with working towards and effecting real social change, can't we just listen without making it about us -- or get out of the way?

This is hard for me to write. I like everyone who wrote for the Dialogues. I always want everyone to get along. And, when I find out people are upset my heart goes out to them -- as it did to Rob Rummel-Hudson when there were real-life repercussions from participating in the Dialogues, and as it did to so many of the participating self-advocates who felt that Robert and other parents continued to justify not listening to and dismissing them.

I am not saying all self-advocates are paragons of righteousness and perfection, or are incapable of making mistakes, or that we non-disabled parents need to listen to every last word they say and can never argue, never have the right to stand up for ourselves. That would be absurd, as it would be to expect self-advocates to view us non-disabled parents the same way. But when the discussions are about what self-advocates want, and what they need, and what they deserve? If we want to be the kind of parents and allies our kids want, need, and deserve, then we need to listen.

Again, I recommend people read the second week of the Dialogues, which would be the top five posts at the following URL, i.e., Day Six through Day Ten: http://thinkingautismguide.blogspot.com/search/label/dialogue.

I also recommend reading Jean Winegardner's excellent essay on the Dialogues, Who Should Lead the Autism Rights Movement:
http://communities.washingtontimes.com/neighborhood/autism-unexpected/2011/sep/30/who-should-lead-autism-rights-movement/

Update: additional recommended posts from advocates:

• Neurodivergent K: For the Billionth Time, I DON'T HATE PARENTS
• Eater of Trees: Allies Are Terrible Forever
• Moonlit Lily: A Comment That Became a Post

Three Totally Different Autism & Advocacy Posts

I was on a slightly guilt-tinged vacation this week. Couldn't you tell? (You could if you were expecting any kind of correspondence from me.) Seymour and the girls and I had a lovely time boating with Seymour's folks in the San Juan Islands while Leelo had the time of his life at camp (I'm picking our boy up this morning, the rest of our family remains afloat). Here are the three posts I sent hurtling out onto the internet from the boat:

On BlogHer: Why We're All on the Autism Spectrum (or What I Learned About Myself at IMFAR). Excerpt:

Being an autism parent has always been a convenient way to laugh off my social ineptitude. But what if I'm more than just quirky? I came home from IMFAR determined to explore the matter. The first thing I did was take the AQ (Autism Quotient) test. I was careful not to exaggerate my responses, taking the milder options when unsure. I still scored 32, above the test's threshold. What does this mean?

Some folks have complained that it's dismissive to claim we're all on the autism spectrum. Since I'm grumpy about no longer being on the high seas sans responsibilities or drinking 25 year old vintage port, I've been rather irritated by those comments -- and since I'm a rotten commenter I'm just going to repost my response here:

I think some folks are having trouble reading past the headline to the conclusion: the more information we all have about ourselves, the better.

And I don't think we're all a little autistic (or all a little bisexual, for that matter). I think those spectrums have poles, and while the paths between the poles aren't necessarily linear, we're all somewhere on them. My hope is that this [post] helps people think more inclusively about our commonalities as well as our differences.

I also posted twice on TPGA (the Thinking Person's Guide to Autism). First on Summer Strategies for Autism Families, whic was an update of my 2009 BlogHer essay When Summer is Extra Special. Excerpt:

The problem with mostly-mommy-most-of-the-time: Leo is used to 1:1 supervision and engagement all day long, and I can't possibly provide the kind of routine and stimulation he craves, no matter how many camps and grandparent visits his sisters get shuffled off to. I try to keep Leo occupied, and I have a lot of support, and having an iPad helps, but I still worry that -- as has happened in summers past -- it won't be enough, and Leo's behavior and abilities will keep disintegrating until school resumes at the end of August.

So, understandably, I'm scared of summer. But I also think it has a lot of potential. It won't all be minefields

I was surprised at how much I needed to revise the essay in just two years, in all-positive ways. Leo's behavior is on a such a more even keel (and I'm two years farther away from Leo's traumatizing -- for him and me -- wrong-medication winter of 2008), our boy has started traveling again, we no longer have to stake out his camp office overnight to get him a 1:1 placement, and damn, he's got that iPad. This summer should be a good one.

The second TPGA post (which just went live today) is a fascinating interview & conversation I had with Syracuse University's Alan Foley, on how he developed his excellent free app iAdvocate (did I mention it's free? Does your kid have an IEP? You need to download this app, now). Excerpt:

Part of the intent [of developing iAdvocate] was to help the parents who confront the [potential educators or administrators responses to parent requests] statements for the first time and completely shut down. We really want to help those parents get their feet in the door!

...

Also, the concept of an advocacy tool has been very interesting -- there are lots of other contexts in which there is an information differential or a power differential in which something like this could be useful, for instance working with immigrant families. I feel like we've developed a nice model.

Yet another example of how iPads and iDevices are so much more than AAC -- and are supporting children and adults with special needs in ways no one had anticipated. When are insurance companies going to start funding the devices already?

Off to pick up Leo from camp. Have a lovely weekend, folks.

41

It's my birthday! I intend to work, go to yoga, work, go to lunch, work, be secretly grateful that Iz injured but did not break her toe and cannot go to soccer practice so we can all go out to dinner, and work. There will be interstitial family time, topped off with a dulce de leche cake. I may sneak off and treat myself to Scott Pilgrim 4 - 7,  Avengers Disassembled, or New Avengers 1 - 7. Dreamy!

The best birthday gift you can give me: an intelligent comment on my post at Shot of Prevention, as there are 250+ comments as of this writing, many from anti-vaccinationists of very little brain but of great copy-paste/parrot power. Those who can think are using their talents for sarcastic nitpicking and distracting and general thread derailing, since they can't come up with arguments other than "we don't believe your evidence and science." Those of us participating in the conversation are doing fine, keeping the thread on-topic while politely lopping off spiraling conspiracy theory hydra heads -- but more strong clear smart voices would be welcome.

You could also forward my Autism Speaks post on appreciating Leo's hard work to anyone who could use a dose of autism awareness/acceptance/advocacy. The supportive comments -- so lovely --  are a nice contrast from the bile of the Shot of Prevention comments, and a good example of the power of positivity. Ellen of LoveThatMax has what I told her is a "parallel universe" post up today, about rejecting the complacency of acceptance, definitely worth your time.

Or you could take to heart and pass on the following passage from Kim Edwards' fluidly written novel The Memory Keeper's Daughter, which Ellen's post evoked, for me:

Caroline [mother-by-choice of a child with Down syndrome] would never forget those hours, the excitement she'd felt, as if she were waking from a long, slow dream. What would happen, they conjectured, if they simply went on assuming their children would do everything. Perhaps not quickly. Perhaps not by the book. But what if they simply erased those growth and development charts, with their precise, constricting points and curves? What if they kept their expectations but erased the timeline? What harm could it do? Why not try?

Or you could release me from the obligation of watching Parenthood just because it has an autism thread. I veer away from family/relationship dramas; I watch House, Fringe, Glee with the kids, and sometimes SVU (in the background while I work). So unless enough people tell me Parenthood is a revelation, I'm erasing it from the queue and not looking back.

Or you could tell me that I don't look silly in my Comcast Upside interview about Leo & his iPad, now that it's been posted online. LOOK AT THE INTERVIEWER, DUH. I got more comfortable and animated eventually; a good learning experience! And hopefully other folks will find the interview useful.

Or you could donate to:

• www.SEPTAR.org 
• www.AutismScienceFoundation.org 
• www.HollyRod.org

As always, hope your day is a particularly lovely one, too.

Autism and Vaccines: Stand Up, Speak Up, Be Smart

We now have several mainstream articles per week on two autism and vaccine issues:

1. Study after credible study finds NO link between vaccines and autism.
2. Decreased vaccination rates jeopardize our children's health -- California is experiencing its worst whooping cough outbreak in 50 years, and it just so happens that the counties with the highest rates of whooping cough -- Sonoma and Marin -- also have the highest rates of families taking "personal belief" exemptions from school vaccination requirements.

Which means that those in autism causation misinformation camp are reduced to spreading their beliefs and false claims with foxhole-style fervor, as in today's HuffPo Deirdre Imus interview with two Age of Autism writers, Mark Blaxill and Dan Olmsted. Here's an excerpt:

Deirdre: "That certainly is contrary to what mainstream medicine and science is saying, which is that autism is basically a genetic disorder. Many argue that there has been no real increase, that it's just more awareness and better diagnosis. And the courts have ruled against families that have claimed that vaccines cause autism, and just recently shut the final door on those cases.

Mark: "That's certainly what some orthodox autism scientists have been saying, but that doesn't make it true. Some of these people, they've made careers of talking a lot, but what they're really saying is basically incoherent blather. The problem is the implications of an epidemic are so profound along so many dimensions, so foundation-shaking that the medical industry and establishment are kind of circling the wagons. But at their core, their arguments make no sense." [Emphasis mine -SR]

I really hope that smart readers, like you, will read through the entire article and not take my word for  why it stinks. That you don't actually need me to point out Blaxill's and Olmsted's information shaping and emotional bait-laying: that because of their backgrounds in loving statistics and  professional journalism, we should believe them and their charged interpretations of data -- and not the "blathering" scientists who as a professional rule present their findings neutrally.

I know why people like Blaxill and Olmsted spread this misinformation. I understand that those in their true believer camp really are believers, and that a fact attack is not going to get them to change their minds. But I'm also done with pretending they don't exist. Such extremists may represent splinter interests, but they are loud and persistent in their need to poke holes in, rather than understand, the science behind the issues. They still have the ability to misdirect gullible or inexperienced readers. And as the California whooping cough outbreak may well indicate, they can cause real harm.

So I'm speaking out against autism & vaccine misinformation like that ceaselessly spread by Age of Autism. And I encourage you to speak out, as well. Because, as I wrote for BlogHer last week, my children, and your children, deserve the very best advocacy we can give them.

Holly Robinson Peete: Autism Style, Towards Clarity and Grace

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

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

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

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

"Autism is not a divorce mandate."

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

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

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

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

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

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

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

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

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

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

You're doing it wrong.

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

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

From Outrage to Activism

I have a new post up on BlogHer, titled Autism: From Outrage to Activism. Here's an excerpt:

"...imagine a kid like my Leo, with autism, at school, but without Leo's educational supports and accommodations. What do you think would happen to that child? In the case of Zakh Price, an eleven-year-old from Arkansas, the answer is charges of felony battery."

If case's like Zakh's make you itch to do something, I also list actions you can take -- from major to minor. Do add anything I've missed.

Down BlogHer Way: A New Post

*Roar*

My second BlogHer post is up: A Declaration of Fierce Mama Bear Love.

It's got everything: Passion! Advocacy! A cute picture of Leo! A list of his nicknames! Bop on over and let me know what you think.

You May Approach the Short Bus

That's the title of my first post as a BlogHer Contributing Editor. It's a friendly but unapologetic statement of purpose, and a declaration that the responsibility for children with special needs transcends the boundaries of the special needs community. Here's the BlogHer summary:

When I realized my son Leo had autism, I saw short buses everywhere. They ARE everywhere. If you don't believe me, take a tally. Then think about the kids riding on them, and their parents and families. I want you to see all those buses, and consider what they represent.

Click on the button below to read the whole post: