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Brash but Vulnerable
on October 18, 2010
Readers familiar with the online autism community and the vaccine controversy already know who Kim Stagliano is. She is a mother, activist, and writer, AND the managing editor of Age of Autism, a blog that calls itself the "daily web newspaper of the autism epidemic."
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 (hee, I suspect, my detractors will say I am).
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. It displays that there's a long way to go in educating people about the differences between heritability and genetics, for one thing. Ah, and the whole science and critical thinking things, too.
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 provides 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.