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.

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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

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.

Make a Difference for Autism Research, for Only $1

Seymour & Iz atop Orcas Island's Mt. Constitution

Just got the following press release from the Autism Science Foundation (whose cool shirt my husband is wearing in the photo above):

You Can Make a Difference With Only $1 (Yes, That's One Dollar!)

Can $1 really make a difference? You bet! Today the Autism Science Foundation is the featured nonprofit on Philanthroper.com!

Philanthroper has been described as the "Groupon" of the nonprofit world. Each day they raise funds $1 at a time for a selected nonprofit whose work they think is outstanding and today that's ASF!

Philanthroper is about group giving. If everyone gives a little bit it will add up to enough for us to fund another critical piece of autism research. All funds raised through this project will go directly to research.

Please donate $1 today [https://philanthroper.com/deals/autism-science-foundation] and then SHARE with all your friends. After making your donation, post this Facebook update or send an email to your family and friends. This is an easy and simple way to get even more support for ASF's work.

IMFAR 2011: Hat Tips & Memories

I had the best time ever at IMFAR 2011. Apparently people with autism and people who are related to or interested in people with autism are ... my people. Apparently I like nothing more than being freed from the tyranny of small talk while surrounded by unabashed, voluble enthusiasts. Though the frenetic information download pace of the conference itself had me cycling into euphoria then crashing from overwhelm several times each day, these folks made the experience more than worthwhile. (My IMFAR conference and session dispatches can be found at the Thinking Person's Guide to Autism.)

Alison Singer and the Autism Science Foundation provided the travel grant that allowed me to go to IMFAR in the first place, plus an extra-comfy ASF t-shirt that my husband openly covets. It was great to finally meet Alison in person, and staffers Jonathan Carter, Dawn Crawford, and Max Rolison were helpful and cheerful company. I'm additionally grateful to the ASF for facilitating the press pass that gave me leave to hide in the Press Room whenever IMFAR overload shut me down.

Due to a series of coincidences, Matt Carey was my mostly conference companion. He was kind, wry, and every bit as smart in person as he is online. Those who know him from his serious LBRB writings may be surprised to read that I had to beg him to stop making me laugh so much, as one of my sensory issues is a marked aversion to snorting food or liquids out of my nose.

Our ASF Travel Grant compatriot M. C. (Shidash) was also the kind of company I enjoy -- not just smart, not just enthusiastic, but with a marked sense of purpose and community. Plus an appreciation for cheesy toast and cool hats. And hermit crab rights. And service dogs. And app development.

Steve Silberman was the source of many intense, intense, rewarding conversations and ever so many great stories. He's really f***ng cool. I believe I still owe him a round of drinks.

Stephen Shore was only onsite for part of the conference, but radiated pure kindness. It was great fun to watch him tickle the digital ivories on Leo's iPad piano, and I do so wish we lived within driving range so he could help us suss out a way to tap into Leo's musical talents.

John Elder Robison is one of the most effusively inclusive people I've ever met, and was the catalyst behind many impromptu IMFAR social events. Conversations with him about the complexities of motivation, agenda, and community (and also about the Morganza spillway) were enlightening. Did you know his legs are twice as long as mine plus he has twice as much energy? I found this out when a group of us scoured downtown San Diego on a dinner quest.

Alex Plank is as charming as you might suspect from his WrongPlanet.net interview series with John Robison's son Jack. He also had the most deadpan sense of humor onsite. He and his WrongPlanet crew AJ and Noah plus Susan Levy (a force in her own right as well as a compelling conversationalist) were busy busy busy throughout the conference, shooting and editing IMFAR video highlights and interviews.

As I wrote on Thinking Person's Guide to Autism, I was pleased to witness Autism Speaks funding so much of the promising research presented at IMFAR. AS spokespersons Ali Dyer and Peter Bell made real efforts to reach out to stakeholders, which was appreciated.

I was also extremely grateful to my Thinking Person's Guide to Autism team members who couldn't come, for various reasons --  yet were present in spirit, via email, Twitter, text,  and phone. Jen Myers stayed on top of what became a rather frantic TPGA book cover design process -- it is so gorgeous, can't wait to show you all; Emily Willingham fielded my calls about approaching researchers who presented questionable poster material even though she was in the middle of moving; Liz Ditz monitored and reported on the five- or six-ply IMFAR information streams and tweeting topics I both did and did not get to; and Carol Greenburg propped me up and kept me going via email reassurances when that conference overwhelm spiraled from mildly amusing to legitimately distressing.

Final thanks to Seymour and the kids for the indulgence of five days away from home, and also to my mom for letting me stay with her during the conference. Not only was my mom the best company of all, but staying with her meant coming home to this view every night.

Grateful, grateful, grateful.

Blogging IMFAR

I'll be at IMFAR, the International Meeting for Autism Research, for the next four days. I'll be blogging as much of the conference as I can, at the Thinking Person's Guide to Autism, starting with today's 11 AM PST press conference -- so stay tuned!

The number of IMFAR sessions and panels [PDF] is incredible. If you want to make a case for a specific session I should report on, leave a comment and I'll do my best.

Thanks again to the Autism Science Foundation for the travel grant that made my attendance possible. And if you're actually at IMFAR, do find me and say hello, or DM me on Twitter: @shannonrosa.

Also -- if you'd like to come to Sunday's San Diego iPad workshop, please let me know ASAP so we can fit you in.

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Apparently Leo is not very happy that I'm gone. Nor that I, uh, took his iPad 2 to lead Sunday's workshop -- guess I should have had that original iPad raffle next week, eh? He does have his iPod touch, but not great planning in hindsight. No (other) regrets -- Leo's former iPad went to a teacher in our very own resource-challenged school district, a teacher who has an included child with autism in her class. So even though folks entered the raffle from all over the country, I got to hand-deliver the iPad, and it couldn't have been a better match.

Poor Leo. I'll miss him too. There will be lots of Skype video chatting going on, methinks -- we'll see if that will make him feel better or just makes him more sad. How do all y'all keep connected with your kids, if and when you travel away from them?

Leo's iPad Raffle

photo (c) 2010 Kelly Nicolaisen

Leo just got an iPad 2. Since he won his original iPad -- you know, the one featured in Apple's iPad: Year One video on the left -- with a raffle ticket, we decided to raffle that iPad off to a new owner.

Congratulations to winner Megan Savage!

Update: The raffle is over, you helped us raise $890 for the Autism Science Foundation! Amazing.

Please go to Leo's iPad Raffle Crowdrise page to make your donation and buy your virtual ticket.

The winner will also receive the following free apps, courtesy of their developers:

• Dr. Seuss's ABC by Oceanhouse Media
• Bob Books by Learning Touch
• TouchTrainer by Orderd.com
• Turn Taker by Orderd.com
• Quibble Kids by Chess Pie Media
• Swapsies by Spinlight Studio
• TallyTots by Spinlight Studios
• Speech With Milo: Verbs by Doonan Speech Therapy
• Speech With Milo: Prepositions by Doonan Speech Therapy
• Speech With Milo: Sequencing by Doonan Speech Therapy
• All About Me by I Get It! LLC
• Color Mix for Kids by EightFold Education
• Be Confident by Electric Eggplant
• Zanny: Born to Run by Extra Special Kids LLC
• GraceApp by Steven Troughton-Smith *NEW* 
• The Three Little Pigs Interactive Storybook by Nosy Crow Apps *NEW*
• iCommunicate by Grembe *NEW*
• Yum Yum Yum by PicPocket Books *NEW*
• What A Pest! by PicPocket Books *NEW*
• Wednesday is Spaghetti Day by PicPocket Books *NEW*
• Tractor Mac Arrives by PicPocket Books *NEW*
• Snuggle Mountain  by PicPocket Books *NEW*

We're asking $10 for each virtual raffle ticket (since that's the minimum donation for Crowdrise, the fundraising org), but if you can, please donate more! All donations will go directly to the Autism Science Foundation, as a thank you for my IMFAR travel grant.


Raffle ends at noon PST on Friday, April 29th, the winner will be announced at 1 PM PST, and will be selected using Random.org.

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Fine print:

• Entrants are bound by the rules laid out on this page.
• iPad will arrive as is: one used 16 GB iPad 1 with case and charger, no warranty or Apple Care. We are not responsible for damage en route or technical problems upon receipt.
• The iPad will be restored to its original factory settings. The new owner must set up a an iTunes account, and install any apps.
• Entrants must be both (1) a legal resident of the United States and (2) at least eighteen (18) years old.
• Entrants are responsible for any federal, state, county or other local income taxes.
• Entrants agree to waive, discharge, release and hold harmless Shannon Des Roches Rosa from any and all liability for any injuries, loss, or damages of any kind arising from or in connection with this raffle.
• We cannot accept entries before or after the eligibility period. We are not responsible for lost or misdirected entries.
• Winners are responsible for confirming notification and providing a valid U.S. mailing address within 72 hours. If winners do not contact us within the 72 hour time frame, we will select an alternate winner. We are not responsible for winners' lost or misdirected emails, tweets, or Facebook messages.

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

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

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

Consider the perspective of Alison Singer, science advocate, formerly of Autism Speaks, currently of the Autism Science Foundation. When she speaks on autism and vaccinations, on why parents make scientifically unsubstantiated choices, she does so with diplomacy and compassion:

SR: Why do you think scientifically refuted claims of autism causes (vaccinations) and cures (chelation, etc.) find such a wide audience?

AS: I think it’s because parents love their children so much. It’s very hard to accept that your child is going to struggle and have these tremendous challenges. It’s natural to want to blame someone or something. Believe me, I've been there. But parents need to look at the data. You can't be so focused on anger that you lose sight of what the science is saying because that's really not in the best interest of the kids. I would encourage parents to look at the science and make decisions based on the science. And the science is clear in the case of vaccines and autism. Vaccines don’t cause autism. I think families were right to ask that the vaccine studies  be done in the late '90s and the early part of this decade, but our public health community really responded to that. And we now have dozens of studies looking at vaccines and vaccine components, all of which have yielded the same answer that, no, vaccines do not cause autism. I think we owe it to our families, we owe it to people with autism, to fund studies that are likely to yield new information. If you keep asking the same question, you're going to get the same answer. We have to ask new questions and try to find out what really is causing autism.

For contrast, when antivaccinationist J.B. Handley of Age of Autism talks about Ms. Singer's perspectives on parents making scientifically refuted choices, he does so with rage and contempt, e.g., today's post: Alison Singer Mispeaks at Yale: Flaming Moron or a Flaming Liar? Excerpt:

"...Ms. Singer explained how many of us delusional parents have no training in the scientific method. With our tiny minds, we just don’t understand the science that’s being done around us to help our kids by the big guy, the benevolent public health system. With her snide tone and rolling eyes, we’re all supposed to understand that Ms. Singer is on the other side of this contrast: she gets it. The science. It’s the Autism SCIENCE Foundation, after all. Poor desperate parents with their teeny little minds, they are so gullible. And stupid."

I cannot take people who froth and rage and point fiery fingers seriously, not when it comes to science, not when it comes to research, not when it comes to making decisions that affect children's welfare. While it sometimes seems that we autism parents are running on naught but passion, we also need to remain clearheaded about the choices we are making, and why we are making them.

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

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

Update: Turns out Emily was blogging along similar lines yesterday and today, with different examples and in tapestry-like detail (if you don't follow her, you should):

• Who are the Villains Here?
• When Autism Parents Collide

Update #2: A reminder that it is the sensation-seeking media which perpetuates antivaccinationist viewpoints as "legitimate" and gives willful misinformationists like Dr. Andrew Wakefield heavyweight status, whereas an objective analysis gets Dr. Wakefield laughed out of the ring before the first bell.

Double Dipping on BlogHer

BlogHer had me plaster up two posts this week, rather than the usual just one.

The first is about the Anita Teldadi adopted-child surrendering scenario. As I wrote last week, the story punches some of my most sensitive buttons. I tried to sort out my tangled emotions in the post, about what relinquishing a child means to someone who has done it as a birth mother, and also to a someone who claps her hands over her ears and starts yodeling whenever anyone brings up the term "residential care" with regards to Leo. When does being the best parent for a child mean putting them into another's care? I'd be interested to know what you think.

The second post is an interview with Autism Science Foundation president and founder Alison Singer. She is a role model for parents like me whose attitudes and outlook and education about our children with autism and indeed on autism in general have evolved over many years. I particularly admire her positivity; she shows that it is possible to highlight approaches harmful to our children or autistic adults, that drain the wallets of the autism-affiliated and credulous -- without using a verbal baseball bat. She calls for us all to move on, be smart, be mindful of the role of love, and to save our energies and resources to support our kids and families, now. She also talks about her relationship with the Neurodiversity community, and clarifies what exactly the Autism Science Foundation does and plans to do (hint: support research research research!).

I'd be grateful if you'd leave any comments on the BlogHer posts themselves. Thanks.

New & Upcoming: Alison Singer Q&A; Oh, Internet!; Teen Bullying

Got me a new post up on BlogHer, about how there is no reason for those of us with special needs in our lives to be sad and lonely if we have internet access. We can be sad and lonely TOGETHER! I jest, but seriously, people -- if you're feeling isolated, Twitter and Yahoo! Groups are just waiting for you to plunge into their warm, squooshy, welcoming depths. I have specific recommendations in the post, but don't forget to leave a comment about your own favorite online special needs community resources, too.

Can I Sit With You? has a new post, as well, with guest input from tween and teen social skills and advice expert Annie Fox. She covers four frequently asked teen bullying questions, with ideas for what kids can do in each scenario. Meaty stuff. Check it out and let us know what you think about her take on teen troubles.

On October 6th I'll be doing a BlogHer Q&A with Alison Singer, founder and president of the Autism Science Foundation. Whether Ms. Singer makes you cheer or spew nastiness, I am certain that you, like me, are curious about the direction and goals of the Autism Science Foundation, why it was founded, and how it will differ from Autism Speaks. Read Ms. Singer's own perspective on the "driving off a bridge" statement in the Autism Every Day video, neurodiversity, and autistic heterogeneity, then send me your questions or leave them in the comments before September 27th.

The Lupron Protocol: One of the More Repugnant Autism Treatments

I don't tweet as many autism articles per day as Ms. Ditz does -- in fact it appears she's given up the Blogosphere for the Twitterverse; come back to us, Liz! -- but I do forward the ones I've read and found worthy of notice. (You can follow me on Twitter or check the Tweetstream on this blog sidebar to see the latest on what's gotten me hopped up and/or thinking harder.)

One popular Twitter autism topic that deserves a more widespread smackdown is the Lupron Protocol, in which Mark & David Geier "treat" autistic children while incidentally charging thousands of dollars more per month than that chemical castration drug actually costs. Financial exploitation aside, experimenting with such a powerful hormone therapy on children who already have developmental issues makes me feel physically ill. Many parents swear that it has helped their children, but I worry -- as I now do with most non-evidence-based autism treatments -- that those parents are being victimized by yet another chapter of the Society for Scamming Credulous Autism Families.

My favorite anti-Lupron Protocol stance so far (i.e., the one you should forward to all of your friends) is not a blog post but a recent article in the Chicago Tribune. In it, Cambridge Autism researcher Simon Baron-Cohen comes out swinging about just how harebrained and morally questionable the Lupron Protocol is. I've included some standout quotes, and emphasized what I consider to be the most important one:

Simon Baron-Cohen, a professor of developmental psychopathology at the University of Cambridge in England and director of the Autism Research Center in Cambridge, said it is irresponsible to treat autistic children with Lupron.

"The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror," he said."

Several parents whose children are on Lupron told the Tribune that it works, saying their children are better-behaved and show cognitive improvement. "It was an obvious, undeniable result," said Julie Duffield of Carpentersville, whose 11-year-old son has autism. "I wish you could see what he was like before."

Experts said such beliefs are common among parents who try alternative autism treatments. It's easy, they say, to attribute normal developmental leaps to whatever treatment is being tried at the time.

"It has become a cottage industry of false hope, and false hope is no gift to parents," said Autism Science Foundation President Alison Singer, whose daughter has autism. "A lot of these therapies have no science behind them. You are using your child as a guinea pig."