An Autistic’s Review: Thinking Person’s Guide to Autism

L to R: Corina Becker, Kerry Magro, Shannon Rosa,
Stephen Shore, Carol Greenburg, Jennifer Myers.
TPGA contributors all. At IMFAR 2012.

This review is by self-advocate Kerry Magro, whom I finally met in person at IMFAR last month. Thanks Kerry!

Kerry was diagnosed with Autism at 4 years old. Now as an adult Kerry has become a disability advocate who has been featured in television, radio, and film. Today Kerry works as a Motivational Speaker, Co-Host of Hope Saves The Day: Autism Radio, and Vlogger for his blog “My Autism My Voice.”

Kerry also taped a video review:



A community is defined as a group of people living together in one place where they are often intertwined with a common goal or purpose. Now, if you were trying to define an autism community, this book could certainly be one of your best examples of that. Thinking Person’s Guide to Autism, which was edited by Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham and Carol Greenburg gives us a look inside autism in today’s society from some of the people who know autism the best. It started off as a blog where they asked people within the autism community to send essays focused around autism related topics. It ended up book published by Deadwood City Publishing.

This is no ordinary book. After reading it I was astounded by the amount of information. There is a wide range of topics in essay’s that stay on point with a clear mission and purpose. It is something that any reader who cares about autism can get behind.

I had always been an avid reader of the Thinking Person’s Guide to Autsim blog and even wrote a blog post for them about Coming Out About Autism in College in August 2011, so I knew first hand that a collection of these blogs posts could be great.

The main areas of the book that stood out to me were done by the editors along with the essays by Laura Shumaker (SF Gate, A Regular Guy with Autism) and Jess (A Diary of a Mom). The book does a great job of balancing between informing the reader and also giving hope and inspiration to them as well. It’s a book that’s very well rounded overall.

Along with the essays comes a great deal of resources at the end of the book, which I found impressive. Between recommendations for books, movies, online resources, and blogs, there is a sense of further learning for readers of the book.

The next step I see for the autism community now is to continue to encourage young individuals on the autism spectrum to pursue literary work. There were several essays from autistic adults in the book and I’m optimistically hoping that we hear from one or more of these voices on a best-seller list in the near by future.

In the end I commend everyone at Thinking Person’s Guide to Autism for all their great work in this project and hope they come out with a sequel very soon to include more of the blog’s wonderful essays.

If you want to learn more about The Thinking Person’s Guide to Autism please check out the blog here.

What Would You Say to This Misguided Autism Parent?

Just came across this. Sigh. She seems like a reasonable, passionate sort -- but is totally invested in biomedical/DAN! autism chicanery. What advice would you have? How would you approach her?

My son has been back on gluten (wheat and related grains) for five days now. His behavior hasn't taken any noticeable nose dives, no sir. Quite the opposite. On Friday he went up to our friend Mary, and announced "Dat's Mary!" Everyone in the room was shocked and pleased. That same day his speech therapist told me he'd had his best session in weeks.

And (apologies, gentle readers) his bowel movements haven't been liquified, either. Those little logs are still rolling along. I am hopeful, oh so hopeful, that we can eventually phase in dairy, chocolate, citrus, peanuts, and sugar.

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

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

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

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

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

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

Ways to get started:

• Read Karyn Seroussi's Unraveling the Mystery of Autism...
  Novelized account of her son's recovery due to a special diet; a bit shrill, but compelling nonetheless.
  
  
• Read Lisa Lewis's Special Diets for Special Kids
  Causation, theories, recipes.
  
  
• Find Yourself a Good DAN Doctor
  Ask for recommendations from current and former patients. Some of these practitioners should be canonized, but I have heard of others who are costly bumblers.

...

...

...

Well?

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

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

TPGA on Special Needs Talk Radio

Yesterday the entire TPGA editorial team -- me, Jen Myers, Liz Ditz, Emily Willingham, and Carol Greenburg -- was interviewed by Elise Ronan on Special Needs Talk Radio. It made me incredibly proud to be part of such a smart team of ass-kicking women.

Listen to internet radio with SpecialNeedsTalkRadio on Blog Talk Radio

We talked about the forthcoming TPGA book, why it is so important for both our team and our project to represent an autism cross-section -- parents, Autistics, and professionals; what we hope to accomplish; the fact that the only investment in this all-volunteer project is our own blood, sweat, and tears (and, OK, occasionally the blood of non-critical-thinkers); and that we created this project to be a one-stop resource for families and individuals new to autism, to help them fast-forward pass the negativity and misinformation from organizations that may appear legitimate to new autism parents and the newly-diagnosed. And oh, a lot more.

A correction: rather horrifyingly, and in my nervousness, I bungled the name of ASAN -- the Autistic Self-Advocacy Network, www.autisticadvocacy.org -- and want the org referred to made absolutely clear. I cited ASAN in highlighting their new project for helping people with autism navigate college -- appropriately enough called www.NavigatingCollege.org. Please check out the new site and broadcast it widely!

Being Proud, Being Present: Autistics Speaking Day

Today is Autistics Speaking Day. I hope you're participating -- if so, submit your post to the official site! -- or at least listening. Really listening.

TPGA is participating with gusto: Carol Greenburg is tweeting fabulously via @thinkingautism as -CG, saying things about being autistic and parenting a child with autism that you absolutely need to read, and Liz Ditz is doing her usual fantastic post curation as -LD  on @thinkingautism and also at our site, ThinkingAutismGuide.com.

Leo's not much for opining verbally -- but I want you to know that he's here, he's not a boy who lets people ignore him, and I'm proud of him every time he does speak out and tell people what he wants.

Photo (c) 2011 Thai Chu, Alive by Shooting

TPGA at BlogHer11 Special Needs Minicon

BlogHer11 Special Needs Minicon panel: Your Truly,
Aurelia, Rob, and organizer/moderator Julia.

I'm on The Thinking Person's Guide to Autism today, with a cleaned-up version of the talk I gave at BlogHer11's Special Needs mini-con about awareness and community building, using TPGA as the example. Here's an excerpt:

Personally, I'm pretty pissy, just so you know. I'm grumpy. I'm easily irritated but I'm also able to prioritize and I think the community is more valuable than I am [all our editors do]. And as a result we've had amazing learning experiences, because we've made learning and listening more important than defensiveness. Even though it can be really hard, especially if people attack you personally -- it's hard to just say, really? Especially when they're talking about your son or your child or your parent or somebody you care about or something that's a really deep emotional experience, it's hard. It's hard to stay cool. This is something that took me a really long time to learn.
 
But it's so valuable. These are the communities that deepen into places where people really value their experiences. I can't tell you how amazing it's been at The Thinking Person's Guide to Autism -- it's an experience I never could have anticipated. 

More BlogHer coming! Including cooking with three star Michelin chefs!

Carnivorous Interlude

Sometimes, when life overwhelms, I check out, chill out, and stare at our carnivorous plants.

(I recommend clicking on each photo and then zooming in, if you can.)

Sundew! We have at least four different kinds.

The plants are all tiny, as plants adapted to atypical nutrition sources often are.
(Those white strings? Cat hairs.)

Those black blobs? Ants. Dead ants. Just like the Pink Panther song.

Some of the sundews unfurl like Predator aliens' mandibles.

And of course we have pitcher plants.
The pitchers make flies' death-throes buzzing really resonate.

And of course Venus fly traps! We probably tease them too much,
tickling their insides with more of those cat hairs to make them close.

It's been a good week, just a busy one. Seymour launched his new Quest site, it's awesome, that marks the end of several really long weeks for him; I was interviewed by The Merc about autism, apps, & iPads (more on that later); and I also interviewed the superlative-worthy Babymouse and multiple-Newbery Honor winner Jenni Holm for BlogHer. And the girls went to their first ever camp together, complete with sleepover last night, and Leo's feeling more like himself. But life is always busy. So until I can kick myself in the pants enough to follow Laura Shumaker's excellent advice on managing parental (especially autism parental) stress as posted today on the Thinking Person's Guide to Autism, I'll be hanging out with the carnivorous plants. A lot.

Think Before You Comment!

I'm going to pull a Foghorn Leghorn on you: Have you seen -- I said, have you seen -- the astounding weekdaily essays we're showcasing at The Thinking Person's Guide to Autism? In just the past three days:

• Frances Vega-Costas wrote about Hispanic autism advocacy in Autism: An Equal Opportunity Disorder.
• Hartley Steiner wrote about special needs parenting and self-care in All Showers Lead to Australia.
• Pia Prenevost let us see her bruised and fragile heart in An Open Letter to Special Needs Professionals.

There's been a bit of a stir in the comments section on that last post. So, I'm going to repeat here what I commented there:

I believe some commenters may have misinterpreted Pia's open letter, and inferred negativity and hostility where none was intended, and when in fact Pia was apologizing for any misbehavior on her (and our, the parents', part).

We consider teachers and the other professionals who work with our children part of our community. We also consider TPGA a community-building space, one where we promote greater understanding and the greater good on behalf our our children and (again) community. I would ask that everyone try to come from a position of understanding and questioning when commenting, rather than defensiveness.

If an entry makes you upset, I would ask you to do four things before considering commenting in a way that could cause harm or strife:

1) Walk away from the screen for a while, and think about why you want to comment.
2) Re-read the essay or comment. The writer might not have written what you think they wrote.
3) Consider why you want to comment. Are you trying to bring about greater understanding of important perspectives for the good of the community, or are you feeling angry and defensive? If it's the latter, go back to #1.
4) Ask the writer if they are saying what you think they said. Think carefully before using provocative phrases.

And remember that you're never alone.

Be the Best Fan Ever of The Thinking Person's Guide to Autism

Some of you have asked how you can help us promote The Thinking Person's Guide to Autism. Here are three simple actions:

1. Follow our Twitter stream at @thinkingautism and retweet our posts. We publish a new essay every weekday, between midnight and 3 AM PST.
2. Join the conversation: comment on our posts! We've had some great discussions, and look forward to more.
3. Visit our Facebook page.

You can also install "like" code for our Facebook page on your blog, as we have in this blog's right-hand sidebar.  Email us and we'll send you the code.

Thanks so much,

Shannon, Liz, Jen, & Emily
Editors, The Thinking Person's Guide to Autism

Summer Launch

We're doing it. We're taking Leo on his grandparents' boat -- the boat they built with a designated berth for each grandchild (though at the time there were just four grandsprogs as opposed to the current sextet) -- and on which he has been on exactly one time, for a quick Lake Washington/Lake Union jaunt. We're prepping him with yet another social story:

His grandparents are being amazing, they are open to Leo staying on the boat for as many nights as he wants to - or no nights at all. Or taking one of the little boats and going ashore for a break. Or going ashore and taking a taxi straight home, if he starts melting. Ideally, though, our weekend will culminate with the extended Rosenberg family gawking at Fourth of July Fireworks from the middle of Lake Union. We are front-loaded with our iPad and tons of new videos and apps and music. We are poised for success.

(Plus his grandparents also do an expert job of stocking their wet bar.)

Hopefully we can celebrate afterwards with our own [Leelo's] on a Boat video. Will keep you updated.

---

In other matters:

I have a post up on BlogHer today, about Leo's extended but successful journey to toileting independence. We now live in a pullup-free household! So proud of our boy.

We are having phenomenal success at The Thinking Person's Guide to Autism. We are drowning in riches. We are achieving our goals, in terms of the spectrum (*rimshot*) of topics we'll be covering, showcasing perspectives from parents and professionals and educators and autistics/people with autism, throwing out strong statements about science and pseudoscience, and being a genuinely useful resource. We have extremely talented professionals donating their services for photography and book design. The commenting has been lively as well. We are so grateful to everyone who is helping TPGA kick ass!

(If you want to be one of the writers who helps TPGA kick ass, we've extended the deadline for submissions for the book to July 16, as we've been truly deluged with excellent writing. But we'll continue publishing essays online if that timeframe is too tight but you still want to participate.)

Other than that, our summer is the usual joyous swirl. Leo is in summer school for his last session at Loma Marina before transferring to Autism Wunderskool in the fall. He also came to one of our local concerts in the park for first time ever, and not only tolerated it but enjoyed it, I think. He was there for three hours and never complained. (Mali certainly didn't complain -- the band played doo-wop and funk, including her very favorite: Earth Wind & Fire! She even corrected me on their playlist -- I thought they were playing Boogie Wonderland but she said, rightly, that it was Let's Groove.)

Iz went to Green Day camp last week, and totally kicked butt with her singing and learning to play the drums (she and her friend Merlin didn't really consider Green Day's lack of keyboards when they signed up). They had a concert on the last day, and played four songs. I was impressed by how unfazed Iz and Merlin were by occasional bonks and how seamlessly they picked back up and corrected themselves without freaking, until Merlin's mom Ep pointed out that our kids have been taking piano from a Ukrainian for several years now, during which time their instructor has bullet-proofed their performance attitudes. Which also explains a lot about Iz's confidence and recovery skills when she played Mary in the Secret Garden (she said she blew it a couple of times, but no one in the audience could tell, including me).

Mali went to local rec center "let's do crafts and run around at the park!" camp with her friend Lucy,  which she considered every bit as worthy as Iz's band camp. Lucy came home with us several times by my request, which is just part of enjoying having the house where friends and family feel comfortable coming over spontaneously, playing, swimming, and just hanging out. Which reminds me, locals: Are you going to the BlogHer10 pre-conference meetup on July 24? I'm going. Hope to see you there.

Also starting to get excited about BlogHer10 itself. About moderating the Autism Panel with luminaries Pamela Merritt, who is SharkFu of Angry Black Bitch, Jean Winegardner of Stimeyland, and Sharon DaVanport of the Autism Women's Network. About seeing so many amazing people. About going to get me some damn Ghanaian food. And about having a book reading with Jen Myers & Jen Silverman for My Baby Rides the Short Bus on Saturday, August 7, at 7 PM at Bluestockings bookstore on the Lower East Side of Manhattan (please come!).

So, a mellow summer. Yeah! How is your summer shaping up?