I have just reviewed Thinking Person’s Guide to Autism and was truly amazed how the people responsible for gathering this collection of over fifty essays made it all happen. Shannon Des Roches Rosa is one of the five editors and also one of the contributors of Thinking Person’s Guide to Autism. She is a founding editor and frequent contributor to The Thinking Person’s Guide site and has also worked on three other books. We are pleased to welcome her to our Author Interview Series.
Shannon Des Roches Rosa >> You are so kind. It’s an honor to be included.
Lorna: We are so happy that our readers will get go meet one of the driving forces behind a wonderful web site, The Thinking Person’s Guide to Autism, and now a book by the same title. Tell us how Shannon Des Roches Rosa’s road/education/experience led her to these far-reaching projects.
Shannon Des Roches Rosa >> I have been writing since 2003 at www.Squidalicious.com , mostly about parenting my autistic son, Leo. Blogging led to discovering and learning from people who share my experiences with autism, and/or who have also been generous in sharing their own autism experiences — as parents, Autistics, educators, professionals, or wearing several of those hats simultaneously. My personal approaches and attitudes to autism have evolved dramatically over time thanks to these friends and mentors, and I’m grateful to have a record of that growth so other people can learn from it. Also, we have been fortunate to have access to excellent services, therapies, and supports for Leo, and it is important to share as much of that information as we can, especially if it might benefit others.
I started writing for BlogHer.com in 2009, as their Contributing Editor for parenting children with special needs http://blogher.com/blog/shannon-des-roches-rosa . It was a wonderful opportunity, and the response to my columns was so positive that I started to wonder about consolidating some into a book. Around the same time, local friends and I realized that the book we would have wanted when we or our kids were first diagnosed with autism didn’t exist — we wanted a how-to guide that was friendly, smart, compassionate, wise, easy to use, and most of all that would help us weed whack through all those questionable approaches to autism that get thrown at desperate parents’ heads. We decided to create the Thinking Person’s Guide to Autism book and blog project. The five TPGA editors are me, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg. Working with these incredible women is a privilege and a delight.
Lorna: What comments have you received about Thinking Person’s Guide to Autism that has made the work involved all worthwhile? Is the book surpassing your expectations?
Shannon Des Roches Rosa >> My goodness, you should see our press page! We’ve been so pleased with the reviews — the positive reactions from so many people we respect and admire have definitely exceeded our expectations. John Elder Robison called TPGA “the best guide to autism that I have seen,” Steve Silberman of Wired Magazine named it his “Book of the Year”, and Ellen Seidman of Love That Max called it “empowering and all about real life.” The reactions that really touch us are usually second hand, from people who tell us that they gave it to a friend whose child had just received an autism diagnosis, and that it made a real difference for them.
Lorna: One of the essays you wrote for Thinking Person’s Guide to Autism is Identifying and Avoiding Autism Cults. You said, “The best investment you can make in your autistic child’s future is a commitment to intense scrutiny of treatment options.” Would you elaborate?
Shannon Des Roches Rosa >> Unfortunately, there are people who view autism as a cash cow, and want to milk every dollar they can out of worried parents who want definite answers or guarantees or cures. Other people — generally but not always parents — embrace that same autism misinformation, and fight for it with all the righteousness and zeal of true believers or cult members. If you don’t learn to think critically, and evaluate autism information using rational criteria, then you might fall for the charlatans’ guarantees or surrender to the believers’ enticing groupthink and exhilarating rage. And those two paths hurt autistic people — they misdirect resources and energy, they promote horribly disrespectful attitudes that autistics are damaged or broken unless “cured” or “recovered,” and they can cause physical harm through gray-area and unsubstantiated medical treatments like chelation or Valtrex.
Lorna: Parents of children with autism will surely appreciate the common sense, immediately doable advice found on the Thinking Person’s Guide to Autism site and in the book. Another of your essays published was, “Does Your Child with Autism Have a Daily Record?” You explained,” Leo’s online daily record has been an invaluable tool for information sharing amongst Leo’s family, teachers, and the rest of his team, and also for providing fast, hard evidence of how well he learns and how much progress he’s made.” Give our readers guide lines how a Daily Record is kept, how detailed it must be, and for whose eyes are you writing it for.
Shannon Des Roches Rosa >> We’ve been keeping a daily record for Leo since 2007. It is shared with his school team and his home program supervisor, who use the information to better understand factors that might influence Leo positively or negatively through the days, weeks, and years — we now have hard data demonstrating that Leo tends to struggle with grumpiness during the winter months, and have very happy springs and summers.
We try to keep the information succinct so it can be usable, and in some cases the record is numerical so factors like behaviors (aggressive or self-injurious) can be tracked using graphs. The basic factors we track are: Date, Health status, Self-care status (any accidents), Behaviors, Sleep: rising and falling times; Medication, Compulsive Behaviors, Language Sample, Diet, and School Notes (which are pasted in from the daily email his teacher sends). Leo’s home record is kept in a simple Google Doc spreadsheet.
Lorna: I was very pleased to read your essay, Why My Child With Autism Is Fully Vaccinated with this information,” You should also know that Andrew Wakefield, the researcher who launched the autism–vaccine panic via a 1998 press conference, had his related research formally retracted and his medical license taken away.” You continued with, “… some people make critical health decisions for their children based on the opinions of celebrities rather than pediatricians.” For parents who are desperately searching for answers or ways to help their autistic child, who should they trust? Where can they start?
We hope it will help people evaluate whether autism spokespeople are trustworthy or not — but basically, if people are selling non-evidence based systems, supplements, or equipment; or if they seem more interested in self-promotion than in helping others, run away!
Shannon Des Roches Rosa
Shannon Des Roches Rosa >> You can trust us! And you should trust your pediatrician, but only if they demonstrate an honest willingness to support and understand your autistic child — if not, get a new pediatrician.
I often recommend our TPGA mission statement which contains an excellent checklist written by our science editor Emily Willingham. We hope it will help people evaluate whether autism spokespeople are trustworthy or not — but basically, if people are selling non-evidence based systems, supplements, or equipment; or if they seem more interested in self-promotion than in helping others, run away!
Lorna: I see you have embraced the new technology and that you are even giving workshops as an iPad advocate. From your schedule of speaking engagements I can see how busy you are sharing advice on using the iPad for independent leisure as well as learning, and also how it can become an invaluable means of promoting a child’s language skills. What advice do you have for parents who know nothing about iPads?
Shannon Des Roches Rosa >> I’d say see if you can borrow an iPad or go to an Apple store during downtime, to better determine if it’s something your child might enjoy and use. Parents Helping Parents is a local Bay Area resource that lets people come in and try out iPads; find out if there’s a similar organization in your area. I’m always happy to answer questions about this, but readers can also read my post iPads & Autism Workshop in a Can, which goes over many additional points about what to consider regarding iPads and autism.
Lorna: Parents are really missing out if your web site, Squidalicious, is not one they follow. Started in 2003, you must now have over 2500 posts! Tell our readers what they can find on your site and how you manage to keep it updated with all your other commitments.
Shannon Des Roches Rosa >> Squidalicious tends to be my more personal site, though now it’s also where most of my iPad writings and app evaluations are so that’s a bit of a contrast. But whereas at BlogHer and on ThinkingAutismGuide.com I tend to get a bit general and preachy, on Squidalicious I tend to write about my families day-to-day life. It’s more about celebrations, Leo’s successes, and the occasional rant. I don’t write as much as I used to, but I try to write at least once each week for the therapeutic value.
Lorna: What will you be concentrating your efforts on in 2012? Please give us your links so folks can follow you. Thanks for letting us in Shannon Des Roches Rosa’s world for a bit… good luck will all your endeavours!
Shannon Des Roches Rosa >> Plans: We’re definitely focusing on spreading the word about the book, so thank you for letting me do that! We’re planning fantastic posts at TPGA for April, which is Autism Awareness Month. We’re going to Toronto for IMFAR, the International Meeting for Autism Research, in May. I’m on the advisory board for BlogHer’s HealthMinder conference in NYC in August. I have iPad workshops and speaking engagements coming up — though I sometimes am behind on keeping my site’s list of events upcoming .
2012 is going to be a productive and rewarding year, and I’m grateful.
But I am also prioritizing balancing my time so I can have enough of for my kids and my family and friends. I don’t ever want to be too busy for them.
Thank you so much for this conversation, Lorna!
Lorna: Amazing interview! Thank you, Shannon, for this glimpse in the life of a busy mom, advocate, presenter, and author. Enjoy your IMFAR meetings in Toronto, Canada.
Follow Shannon on Twitter, read her own blog, and posts at BlogHer Contributing Editor on parenting children with special needs.
Parents you will have the opportunity to interact with Shannon Des Roches Rosa, Jennifer Byde Myers and Liz Ditz on The Coffee Klatch Tweetchat March 26th, 2012, 9 a.m. EST. Our topic will be How to be Smart About Evaluating Autism Information and Approaches