8/26/2010

Sometimes Being a Good Enough Parent Takes All We Have

As a guest editor at Lisa Rudy's About.com site on autism, I've gotten to read some interesting books in the last two months to review. Perhaps one of the most challenging books to read was Kim Stagliano's forthcoming All I Can Handle. My review for the book is up on the site. The audience at the About.com site is assumed to be parents new to the diagnosis looking for information and not aware of the large online dysfunctional family that's out there waiting for them, so the review is tailored to an audience who doesn't know Stagliano, doesn't know Age of Autism, and has been blissfully unaware of the shitstorm of controversy that awaits them. That shitstorm is by no means Stagliano's fault. Well, maybe a little bit, but I'm every bit as direct, so I can admire moxie, even when I think it's misdirected.


So, the review at About.com is specific to the memoir itself and rather short. Is it a book I'd send brand new parents to? No, it's not. But hey, I wouldn't send them to this blog, either. I'd tell them to work hard to find like-minded local parents, to carefully look for online blogs interested in positive community building and avoid all the anger. Our lives are challenging and exciting enough without wasting precious emotional energy on shit that doesn't matter. Focus on the big things, finding ways to help your children, how to work with your community, how to get the help and support you need. You know, big game stuff. Life changing stuff.




So, am I one of the first to get a review out on Stag's book and is there an irony that one Kim is critiquing another Kim's "Kimoir"? Yes.

Kim Stagliano, a mother, activist, and writer, is the managing editor of Age of Autism, a blog that call itself the “daily web newspaper of the autism epidemic.” 

At Age of Autism, the editors and contributors promote the now-scientifically debunked theory that vaccines, specifically the MMR vaccine and thimerosal in some vaccines, are responsible for some cases of autism. Age of Autism in its few years of existence has been responsible for posts deriding many mainstream reporters who have reported negatively on the autism-vaccine connection, for writing inaccurate information on doctors like Paul Offit, and for launching attacks on their version of neurodiversity, defined by Stagliano in her book as “the concept that atypical neurological development is a normal human difference and not what many would call a ‘brain injury’ or disability.”

To be fair, Age of Autism and Stagliano get back as good as they give. To be just as fair, Stagliano’s definition of neurodiversity doesn’t match how it’s used by people who promote neurodiversity nor does it reflect how a charge of being an “ND” is used by the editors, contributors, or commentators of Age of Autism. Neurodiversity, according to Wiki’s definition, which was certainly available if Stagliano didn’t wish to look too deeply, is “an idea which asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be recognized and respected as any other human variation.”

This November, Stagliano, who has become a well known name in the online autism community, will have her first book, a memoir about raising three girls with autism, published. A controversial, rather loud and often brash mom of three, Stagliano is a staunch supporter of Andrew Wakefield, the doctor, now disbarred, who has managed to create a lucrative career promising parents of autistic children, usually with accompanying gastrointestinal distress, that vaccines were responsible, and that he had a plan to help them recover their children, and one chapter of Stagliano’s book is devoted to supporting Wakefield and to refuting the charge that she and Age of Autism are anti-vaccine.

Stagliano denies the charge that she is personally against vaccines and if the risk of not getting her children vaccinated outweighed the risks of vaccination, she asserts she’d vaccinate. Many of Age of Autism’s opponents will decry this and show specific examples of where Age of Autism provides inaccurate information and openly fearmongers, but new readers will have to take Stagliano at her words. Since some of these words have appeared at Age of Autism, I take her at her word. The problem is that the scientific evidence available suggests that the individuals at Age of Autism have inflated, exaggerated or flat out gotten wrong the risks of vaccinations.

Of course, I have to admit that I’m biased; I write a blog that was begun to counter the site that Stagliano is managing editor for. So you might expect cheap shots or a negative review of her book, but you won’t get that. The writing is occasionally uneven, and the chapters don’t always flow smoothly, and because it was an advance reading copy, there are places where edits are needed.  There are chapters, like one on Howard Stern, that leave you wondering at its relevance, but, this isn’t so much a book about autism as it is what it proclaims to be, a “Kimoir.” Howard Stern is important to Stagliano and the chapter’s inclusion provides information about Stagliano’s personality.

Jenny McCarthy provides a short, one paragraph foreward, where she compares Stagliano to Dave Sedaris and Erma Bombeck. That’s a bit of a stretch, but like these both these authors, Stagliano is funny. Often, though, and understandably so, that funny comes with a side of bitter peeking through.

Stagliano makes clear, often in snarky but funny passages, that this hasn’t been the life she was expecting. She name drops expensive shops, restaurants, and name brands that leave a Texan clueless, but it’s always done to indicate that she came from a more wealthy background and has hit financial rock-bottom several times. Stagliano is honest, raw, and real in this book. She doesn’t hide herself, her faults, or those moments where she is not at her finest. And for the most part, she doesn’t apologize for those lapses. So when she does, she means it and you know it. You might not like her for that honesty. You might disagree with her fiercely, but to deny that courage is to make yourself small.

There is no doubt in my mind that Stagliano adores her children, loves them fiercely, enough so that she gave up her underwear in one scene that had me both laughing and crying. And I did a lot of both laughing and crying as I read her book. I’m not a bit ashamed to admit that. After all, I’m fairly loud and brash, too. Others will have to decide if I’m controversial.

Even in chapters that had me less positively engaged, like the ones dealing with vaccines and Wakefield, I busted out laughing at the title to the Wakefield chapter, which was intentionally funny. I did no laughing at, if you get my meaning. There’s nothing to mock here, although there is at times plenty to disagree with.
Stagliano fills in the gaps with this book for readers who’ve been either loving her or not for several years now, as she’s written autism-related blogs at Huffington Post in addition to her work at Age of Autism. It’s an important book for getting background information on how she got to where she is today and how she came by her beliefs.

What you might have expected, if you’re familiar with Stagliano, but will not find, is a dramatic vaccine injury story for either of her two oldest daughters (the third daughter was never vaccinated). No, instead Stagliano offers up her timeline for her oldest and notes the hepatitis B vaccination and the mercury contained in it and the belief that perhaps Mia “may have had encephalitis” somewhere between two and four months. Stagliano also goes through all of her extended family noting that there are no members diagnosed with autism.
There’s plenty of examples in this book of using anecdotes and availability heuristics to justify Stagliano’s beliefs, and it’s something each of us do as we go through our days, trying to make sense of our worlds, and it’s one of the main reasons why relying instead on scientific studies with large samples are far more likely to render a more accurate portrait of reality than what any one person can recall at a particular time.

Despite some significant issues relating to vaccines and to Wakefield, this is a valuable book for readers wanting more information about where Stagliano’s coming from. It’s not a book for folks new to autism; it won’t provide tips, advice, or a warm, fuzzy feeling about overcoming and positivity. It’s a book better suited to readers who’re already entrenched in the online discussion regarding autism and vaccines and unvalidated, untested therapies versus empirically-based interventions, although oddly enough, Stagliano does not detail some of the untested or dubious therapies and interventions she’s used, which she has written about elsewhere. She does discuss the gluten and dairy free diet and the testing her daughters underwent to determine their reaction to gluten and casein.

This book does provide a window into Stagliano’s often difficult life, and it does not gloss over the hardships involved in caring for children with significant disabilities. It is unflinching, even if it that means it’s less than flattering.

This is a book I’m glad I read. At times I lost myself in it; I related to it in many places. I’ve got three of my own on the spectrum, and many of Stagliano’s fears are my own fears. And I laughed hard in all the right places, and I cried with Stagliano in all the right places, too. You cannot read this without connecting to Stagliano when she’s writing about her daughters, and when you do, you will laugh and cry with her, too, and for that alone, this is a book worth reading.

Do I think she’s wrong on a lot of stuff?  Yes, I do, and I think Age of Autism has the capacity to do tremendous harm to all of us. But I understand where she’s coming from better now and that harm isn’t something she’s intending. And readers who are already active in the community need to understand, as well, regardless of where they fall on the Age of Autism fence, because the chances are that those most fervent supporters are coming from similar places.

If we want to help change hearts and minds, we need to know how folks got there in the first place. Stagliano’s book does that. And if we’re really skeptics and committed to the scientific process, it’s incumbent on us to read it with an open mind. I don’t know that we’ll be singing kumbaya together anytime soon, but I know my adversary better, and I think a lot of the time, we could actually be team players (and where positive goals are being worked on for the good of autistic individuals and families, we ought to be).

 If you’re a supporter of Stagliano, you’ll want to read this and won’t need the encouragement, but at least you know up front from someone on the other side that it’s worth your time.

Are Stag and I going to be best buds? No, probably not. And  that's okay. I connected with her book. I did. And you will, too. There's a price to be paid when  you put it on the line, lay it all out, and take the risks she did. She doesn't deserve to be kicked for that kind of courage and willingness to be vulnerable.

It's not a book that's all about her daughters, but it wasn't meant to be, and despite some people's likely charges, it's not all about her, either. It's real. Real in a time of focus-group tested, watered-down, politically correct bullshit is not something to be dismissed lightly.



1 comment:

Adelaide Dupont said...

Really appreciated the review.

I think it will be a nice addition to shelves in libraries and in homes.

Thanks for the indepth material.