Autism Heroes: Portraits of Families Meeting the Challenge by Barbara Firestone, PhD, with photography by Joe Buissink.
I'm taking a brief break from the very text-heavy material that so often accompanies books regarding autism. While this book is not, by any stretch of the imagination, a picture book, it is definitely more photo-heavy than any other book I've ever seen on the subject. The idea of this book is to capture the stories and pictures of families affected by the autism spectrum.
In that goal, the author did admirably well. Many parts of the spectrum are represented, from autistic people who will probably never blend well into society to those that may lead a near-normal life. Perhaps more impressive to me was the fact that the author managed to have representatives of every racial minority in the US. Part of that, I would guess, is due to their location. California is a very densely populated state, so with more people in the area, there would be more chances at meeting a family in any given category and background.
Still, I have no doubts that this book could easily have been the same as many "our stories" books, and been full of white people. It still would have sold plenty of copies. So I really have to cheer for this author, because this kind of diversity of ethnicity and socio-economic background does not happen on accident, and we need more conscientiousness like this. We also need more publicity for the stories of minority families, and this book is exactly that.
The textual stories of the book, accompanied by the pictures, served to convey pretty well where the parents were at, mentally and emotionally. As an autistic person, I found myself occasionally peeved by their misunderstandings and some of the coping strategies they've used to manage dealing with the stress of having an autistic child. But it's not like I have children of my own, so I can't fault them too much. All I can do is try to educate people, gently, that I am not diseased, that it is no one's fault that I am this way, that I am not a hopeless burden, that my life is not over since I'm autistic... You can hopefully see why I get tired of this sometimes.
I get prevented from snapping at parents like some of the ones featured here because they usually mean well and are trying their best to help their kids and themselves, but it's hard not to develop a kneejerk eyeroll reaction when I come across the same stuff over and over, particularly when it's dehumanizing.
My annoyance aside, these folks are providing positive, hopeful stories, and that's a badly needed thing for parents who've just received their child's diagnosis, or have been struggling to find the right services, help, and resources for their child.
I guess I just wish there had been at least one entry that focused less on the parents and more on the person with autism. For a book titled Autism Heroes to be only limited to the families of those people on the autism spectrum, it seems... well, somewhat dismissive of us. I think you'd be hard pressed to find someone (other than Temple herself, perhaps) who wouldn't call Dr. Grandin a hero of autism. And John Elder Robison. And many, many other autism self-advocates. Do they/we not count? Do the professionals that really go out of their way to help us not count, too?
Given the tone of the book, I would guess that if asked, the author would say that self-advocates and professionals aren't really in the scope of the book. The book is, following the title, strictly about families meeting the challenges of autism. And I do understand that. It's just... it's a far too common phenomenon in autism to focus very heavily on the children with autism, and forget that we grow up and become adults. And we don't stay young, either, we age at just the same rate you do. (Or faster, really, giving the effects of stress on the body...) Yet no one likes to pay attention to that fact, or showcase us and our lives. Or listen to us when we try to talk about it.
That's about my only complaint, I guess. That in all the diversity and rich color this book portrays (irony somewhat implied, given all the pictures are in black-and-white), it seems to forget that it's not just families that are heroes of autism. They wouldn't succeed without us also trying our best. Heck, this book wouldn't exist without us. And it's not just autistic children, but adults of all ages.
I'm taking a brief break from the very text-heavy material that so often accompanies books regarding autism. While this book is not, by any stretch of the imagination, a picture book, it is definitely more photo-heavy than any other book I've ever seen on the subject. The idea of this book is to capture the stories and pictures of families affected by the autism spectrum.
In that goal, the author did admirably well. Many parts of the spectrum are represented, from autistic people who will probably never blend well into society to those that may lead a near-normal life. Perhaps more impressive to me was the fact that the author managed to have representatives of every racial minority in the US. Part of that, I would guess, is due to their location. California is a very densely populated state, so with more people in the area, there would be more chances at meeting a family in any given category and background.
Still, I have no doubts that this book could easily have been the same as many "our stories" books, and been full of white people. It still would have sold plenty of copies. So I really have to cheer for this author, because this kind of diversity of ethnicity and socio-economic background does not happen on accident, and we need more conscientiousness like this. We also need more publicity for the stories of minority families, and this book is exactly that.
The textual stories of the book, accompanied by the pictures, served to convey pretty well where the parents were at, mentally and emotionally. As an autistic person, I found myself occasionally peeved by their misunderstandings and some of the coping strategies they've used to manage dealing with the stress of having an autistic child. But it's not like I have children of my own, so I can't fault them too much. All I can do is try to educate people, gently, that I am not diseased, that it is no one's fault that I am this way, that I am not a hopeless burden, that my life is not over since I'm autistic... You can hopefully see why I get tired of this sometimes.
I get prevented from snapping at parents like some of the ones featured here because they usually mean well and are trying their best to help their kids and themselves, but it's hard not to develop a kneejerk eyeroll reaction when I come across the same stuff over and over, particularly when it's dehumanizing.
My annoyance aside, these folks are providing positive, hopeful stories, and that's a badly needed thing for parents who've just received their child's diagnosis, or have been struggling to find the right services, help, and resources for their child.
I guess I just wish there had been at least one entry that focused less on the parents and more on the person with autism. For a book titled Autism Heroes to be only limited to the families of those people on the autism spectrum, it seems... well, somewhat dismissive of us. I think you'd be hard pressed to find someone (other than Temple herself, perhaps) who wouldn't call Dr. Grandin a hero of autism. And John Elder Robison. And many, many other autism self-advocates. Do they/we not count? Do the professionals that really go out of their way to help us not count, too?
Given the tone of the book, I would guess that if asked, the author would say that self-advocates and professionals aren't really in the scope of the book. The book is, following the title, strictly about families meeting the challenges of autism. And I do understand that. It's just... it's a far too common phenomenon in autism to focus very heavily on the children with autism, and forget that we grow up and become adults. And we don't stay young, either, we age at just the same rate you do. (Or faster, really, giving the effects of stress on the body...) Yet no one likes to pay attention to that fact, or showcase us and our lives. Or listen to us when we try to talk about it.
That's about my only complaint, I guess. That in all the diversity and rich color this book portrays (irony somewhat implied, given all the pictures are in black-and-white), it seems to forget that it's not just families that are heroes of autism. They wouldn't succeed without us also trying our best. Heck, this book wouldn't exist without us. And it's not just autistic children, but adults of all ages.
Read This Book If
You're a parent in need of hope and would like a good success story or two. I have no doubts that this book will be as helpful to a parent of a newly diagnosed child as it would be to a struggling parent still looking for services to match their kid's needs.
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