Reminder: Vaccines have nothing to do with autism. Not a single f***ng thing.

A friend recently asked me to join a discussion on autism and vaccines, in which an acquaintance was parroting, much like our ignorant PEOTUS, the misinformation that vaccines are linked to autism -- and also that anyone who says otherwise has been bought by Big Pharma. Here is my response:

Perhaps a personal story might help.

My high-support autistic son is now a teenager. I initially bought into the message that vaccines caused autism, because in the early 2000s it was not easy for laypeople to get past the media hype on the topic, and find reliable mainstream information.

Post-MIND Institute Session
[image: Leo, a preschool-age white boy,
next to an outdoor picnic table set.]

I enrolled my son in a study on autism and regression at the UC Davis MIND Institute, which was founded by parents who sought cures and believed in a vaccine link. The researchers' conclusion, after reviewing my son's infant, toddler, and preschool-age videos, was that he did not regress or react to vaccines, but rather that he followed a typical autistic path of gaining skills and abilities unevenly, and in some cases more slowly than his peers.

In the meantime, researchers have reviewed data involving millions -- literally -- of kids, and found no link between vaccines and autism. Because there is no link in research, only in anecdotes and testimonials that have never once stood up to scrutiny. Not once.

And even the MIND Institute has shifted its focus to understanding and support, and away from its cure-oriented roots, because the founders' theories turned out to be scientifically implausible.

I've since spend much of my time working with autism scientists and researchers as the senior editor of Thinking Person's Guide to Autism, in order to disseminate the most useful autism information possible. I attend International Meeting for Autism Research (IMFAR) every year, and can happily report that, after years of autism-vaccine papers waning in number, the 2016 conference featured only a single poster on how lingering hoax-based vaccine-autism fears affect the immunization status of autistic kids' younger siblings.

So, no. Vaccines have nothing to do with autism. Not a single fucking thing.

P.S. My son is now fully vaccinated.

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.

ASF IMFAR Travel Grants - Applications Due Feb 29th!

I was the lucky recipient of an Autism Science Foundation travel grant to IMFAR 2011 -- the International Meeting for Autism Research. The application process was straightforward, and the experience life-changing -- I saw science in action, asked researchers questions in person, reported on multiple studies/presentations for Thinking Person's Guide to Autism, hung out with several incredibly cool people, and was even featured in a local San Diego news segment about the conference.

Lunchmates at IMFAR 2011. Can you identify any?

This year IMFAR is in Toronto, Canada. If you think the $1000 grant could make the difference between attending and not attending, then I encourage you to apply.


 
Details from the ASF website below; the deadline is this Tuesday, February 29th.

----

Apply for IMFAR Travel Grant

We are now accepting applications for travel grants to send a limited number of parents of children with autism, individuals with autism, special education teachers, and other stakeholders to attend the International Meeting for Autism Research (IMFAR). This year the conference will be held in Toronto, Canada from May 17-19.

The awards cover up to $1,000 of expenses to be used for registration, travel, accommodations, meals and other directly related expenses, including childcare or special accommodations to enable individuals with autism to participate. Grantees are responsible for obtaining international travel documents.
Applications must be received by February 29, 2012.
Grant Requirements:

• Grantees must submit the original receipts for reimbursement and are expected to submit completed travel expense forms within 15 days of return from IMFAR.
• Grantees are asked to participate in ASF related activities at IMFAR including a group photo and social media promotion. Full details will be shared closer to the event.
• After attending the conference, grantees are asked to share what they learned in their own communities to further spread the knowledge gained within 6 months of attending IMFAR. Grantees are asked to send a short write-up plus photos or a video of their activity for use by ASF.

To apply:

• Open to autism stakeholders: individuals with autism, parents of children with autism, special education teachers, graduate and undergraduate students, journalists, and others.   
• Grants are awarded to US residents only, over 18 years of age.
• Applicants should send a letter to grants@autismsciencefoundation.org describing why they want to attend IMFAR and explaining how they would share what they learned with the broader autism community.  
• Letters should be sent as Microsoft Word attachments of no more than 2 pages, 12-point type, "Arial" font, with standard margins.  
• In the email subject line please write: IMFAR Grant.  
• Letters must be received by February 29, 2012.

Recipients will be announced in late March.

• 2011 IMFAR Travel Grant recipients:
• Geraldine Bliss, Parent
• Matthew Carey,  Parent/Blogger
• Shannon Des Roches Rosa, Parent/Blogger
• Mark Fornefeld, Self Identified Individual with Autism
• Abby Hare, Graduate Student
• Erin Lopes, Parent
• Molly McGrath, Self Identified Individual with Autism/MIT Media Lab
• Brianna Miller, Special Ed Teacher, Newark Public Schools
• Sharman Ober-Reynolds, Parent/Senior Research Coordinator, SARRC
• Megan O’Boyle,  Parent
• Max Rolison, Undergraduate Student

Cetacean Carcasses in Cutouts (Rah for Child-Friendly Radiolab)

The kids and I have been listening to a lot of Radiolab podcasts on the iPad, in the car*. It remains my favorite non-KQED-produced public media show. If you're not already a listener, then, to paraphrase co-host Robert Krulwich, "I pity you for how much you don't yet know."

This video, inspired by the episode Loops, "is an intricate world of paper cutouts to illustrate the different stages a whale carcass goes through after dropping to the bottom of the ocean." I especially appreciate the elegant representation of flowing hagfish mucus.

Can't wait to show the kids when they get home today!



*Parents might want to pre-screen episodes for occasional disturbing and/or adult-themed content.

The Autism Corps

UPDATE: I have tweaked the argument below to center on the Teach for America Model rather than the Peace Corps model, and created a petition which I encourage you to sign.

If I had an opportunity to discuss autism with First Lady Michelle Obama, here's what I'd want to talk about:

We need an Autism Corps, modeled after the Peace Corps and AmeriCorps.

There are hundreds of thousands of children and adults with autism diagnoses who need day-to-day support now, and their ranks are swelling. There aren't enough trained professionals to serve them all, and even if there were, many families can't afford them. I can't imagine how those families go it alone, managing their lives without external support -- especially those whose children have moderate to severe diagnoses. Mine is one of the luckiest autism families around; we have access to and funding for the highest quality services, yet we still have plenty of scorched-earth days.

Michelle and Barack Obama have launched a campaign to encourage service, while millions of energetic and idealistic young adults want to work but can't find jobs, and our president has said that he "...believes we must work to guarantee that Americans with ASD [autism spectrum disorder] can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD."

Let's put that all together. Let's create a federally-funded organization dedicated to training volunteers to work with kids and adults with autism. Autism Corps workers could help individuals with autism gain skills and independence, and have recreation opportunities. They could give their families -- all autism families, not just those who can pay for or know how to get services -- some sorely-needed respite. They could make it possible for parents who would otherwise be full-time caretakers to work outside the home. They could supply balance to families who never thought they'd find it. They could make a real difference for families approaching the breaking point.

This is not to downplay the importance of autism discussion, approaches, and research. But those are already on White House and Federal radars. "The Autism Society has invited First Lady Michelle Obama to participate in [their annual conference's] July 24 keynote panel on public policy and autism." This is good news for autism awaress in general, and I hope the panel will be recorded. President Obama has welcomed science back to the White House, which hopefully translates into good news for evidenced-based autism treatments. And the US Dept of Health & Human Resources has publicly released its Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research, which bodes well for future autism research, and answers.

While autism and people with autism shouldn't be demonized, we need to be frank: having a child with autism is more stress than some families can handle. Those families have needs that take precedence over panels and promises and research; they need help getting through the day. They need an Autism Corps. I would hope our First Lady (and her husband) could both recognize and support this idea.