Continuing my crusade through the local library, meet The Autism Revolution: whole-body strategies for making life all it can be, by Martha Herbert (PHD) with Karen Weintraub.
Apparently the trend in book titling these days is grandiose names. Perhaps if I ever get my ideas sorted into a book, I should name it, "The Answer to Life, the Universe, and Everything about Autism," and see if that helps the sales...
My snark aside, the premise of this book is excellent. It attempts to integrate the perspectives of mainstream medicine (safe effective therapy!), biomedical advocates (personalized maximized approach!), parents (help my kids, don't make me fight everyone), and families who have succeeded (learn from our example!).
So it was with high hopes that I started into reading this book. Unfortunately, my hopes were soon overshadowed by uneasiness. I mentioned last week that autism is a near-useless descriptor, but even so, it disturbed me to see the authors talking about "erasing autism," or "reducing autism." The one perspective this book doesn't seem to have is the neurodiversity perspective, or the "we are all better with more diversity" perspective.
I think, as my LENS-doctor pointed out, that this is a case of "autism" not meaning "my particular autism." This book seems to be geared heavily towards parents, and parents who are having to struggle very hard to help their severely-affected children. Kids who, for instance, don't speak, or have apparently incurable diarrhea, or flatly refuse to eat anything that isn't their 10 favorite foods.
Still, knowing that and believing that are two very different things, and I couldn't shake the feeling of dread and unease as I continue to read this book.
That said... as a workbook for parents with heavily affected children, this seems to be excellent. Dealing with my own autism has shown me rather emphatically that it's never really just one thing that needs tending. I could focus heavily on learning how to better interact with people, but then I wouldn't be caring for my depression, my anxiety, my tendency to eat poorly, my hygiene, my supplements, my exercise...
This book focuses on mapping out your particular problems and suggesting changes that may help for general categories, like food, gut bacteria, sensory issues, care professionals, and body-brain miscommunication. The author is well-read and thoughtful enough to know well that no one treatment works for everyone, and so has a wide variety of suggestions on many topics, backed up with real stories of real people.
In general, the advice in the book seems excellent given what I know of my history, treatments I've read about and heard about from my doctor, and general best practices for good health.
My complaint is that this book pretty much exclusively uses "autism" as a synonym for "everything bad about your child." That's kind of offensive to me, frankly. It's not an unusual usage for parents, but as a person with autism who doesn't really see it as "a curse to be overcome," I really, really wish they'd talked to a few neurodiversity advocates before writing this book. Though the authors painstakingly avoided the word "cure" in regards to autism, they might as well not have bothered. Their focus is more or less that, though I do again have to note that "autism" to these authors is "everything wrong with your kid that isn't covered elsewhere."
If we're being entirely fair though, the "your kid is a human being of value" perspective isn't lost on the authors. They actively encourage you to get inside your kid's world, not simply so you can drag them into your world, but because their world is also of value. So it's not like the entire of the neurodiversity viewpoint is lost. Just the simplest understanding of it.
I personally view autism as not merely the diagnosis, but the actual brain and genetic differences that led to my acquisition of said diagnosis... and so "curing" me is neither a possible nor terribly welcome. But it's possible that if we merely view autism as the diagnosis, that I would no longer qualify, now or in the future, because of my skill gains and other improvements.
Read this book if: you or your child are severely affected by autism, or if you're feeling overwhelmed or feel out of options. It's a good background in the science and perspective of multiple schools of thought, even if it is missing in large part the neurodiversity aspect. Also read this book if you're pregnant and fear your child getting autism. There's an entire chapter on things to do to try to avoid that.
Apparently the trend in book titling these days is grandiose names. Perhaps if I ever get my ideas sorted into a book, I should name it, "The Answer to Life, the Universe, and Everything about Autism," and see if that helps the sales...
My snark aside, the premise of this book is excellent. It attempts to integrate the perspectives of mainstream medicine (safe effective therapy!), biomedical advocates (personalized maximized approach!), parents (help my kids, don't make me fight everyone), and families who have succeeded (learn from our example!).
So it was with high hopes that I started into reading this book. Unfortunately, my hopes were soon overshadowed by uneasiness. I mentioned last week that autism is a near-useless descriptor, but even so, it disturbed me to see the authors talking about "erasing autism," or "reducing autism." The one perspective this book doesn't seem to have is the neurodiversity perspective, or the "we are all better with more diversity" perspective.
I think, as my LENS-doctor pointed out, that this is a case of "autism" not meaning "my particular autism." This book seems to be geared heavily towards parents, and parents who are having to struggle very hard to help their severely-affected children. Kids who, for instance, don't speak, or have apparently incurable diarrhea, or flatly refuse to eat anything that isn't their 10 favorite foods.
Still, knowing that and believing that are two very different things, and I couldn't shake the feeling of dread and unease as I continue to read this book.
That said... as a workbook for parents with heavily affected children, this seems to be excellent. Dealing with my own autism has shown me rather emphatically that it's never really just one thing that needs tending. I could focus heavily on learning how to better interact with people, but then I wouldn't be caring for my depression, my anxiety, my tendency to eat poorly, my hygiene, my supplements, my exercise...
This book focuses on mapping out your particular problems and suggesting changes that may help for general categories, like food, gut bacteria, sensory issues, care professionals, and body-brain miscommunication. The author is well-read and thoughtful enough to know well that no one treatment works for everyone, and so has a wide variety of suggestions on many topics, backed up with real stories of real people.
In general, the advice in the book seems excellent given what I know of my history, treatments I've read about and heard about from my doctor, and general best practices for good health.
My complaint is that this book pretty much exclusively uses "autism" as a synonym for "everything bad about your child." That's kind of offensive to me, frankly. It's not an unusual usage for parents, but as a person with autism who doesn't really see it as "a curse to be overcome," I really, really wish they'd talked to a few neurodiversity advocates before writing this book. Though the authors painstakingly avoided the word "cure" in regards to autism, they might as well not have bothered. Their focus is more or less that, though I do again have to note that "autism" to these authors is "everything wrong with your kid that isn't covered elsewhere."
If we're being entirely fair though, the "your kid is a human being of value" perspective isn't lost on the authors. They actively encourage you to get inside your kid's world, not simply so you can drag them into your world, but because their world is also of value. So it's not like the entire of the neurodiversity viewpoint is lost. Just the simplest understanding of it.
I personally view autism as not merely the diagnosis, but the actual brain and genetic differences that led to my acquisition of said diagnosis... and so "curing" me is neither a possible nor terribly welcome. But it's possible that if we merely view autism as the diagnosis, that I would no longer qualify, now or in the future, because of my skill gains and other improvements.
Read this book if: you or your child are severely affected by autism, or if you're feeling overwhelmed or feel out of options. It's a good background in the science and perspective of multiple schools of thought, even if it is missing in large part the neurodiversity aspect. Also read this book if you're pregnant and fear your child getting autism. There's an entire chapter on things to do to try to avoid that.
No comments:
Post a Comment