Twirling Naked in the Streets- and No One Noticed: Growing Up with Undiagnosed Autism by Jeannie David-Rivera
Be warned: this is not a happy book, humorous title or no. This is, if the title didn't make it obvious, the story of a 1st generation autistic person who entirely missed being diagnosed and understood. The results, predictably, were painful for everyone involved.
Autism, like most mental differences/disabilities, is invisible. Meaning, if you passed me in the grocery store and got a good look at me, you wouldn't be able to tell I'm autistic. That simple fact makes people a great deal less sympathetic to my difficulties, because, as the phrase goes, "Seeing is believing." To that phrase I would add its counterpoint: "Not seeing is almost always disbelieving."
There are some few wonderful tales of people rising above their misunderstandings, of simply accepting the odd or unusual person for themselves, and that person then making their way in life, not too scarred or battered. This is not one of those stories.
The very first page of chapter one screamed familiarity at me. It's a series of her traits, and how people labeled her, since they had no understanding of autism to correctly understand what was going on. Descriptive words like "ballerina" are in that list, but much more commonly are negative words: inconsiderate, obnoxious, hard-headed, picky. And as she points out, everything was consistently, in the eyes of others, her fault. Always her fault. This is very common. And wrong.
I can say with certainty that the blame is always placed (thrown, really) at our (autistic) feet. It was my fault if I wasn't perfectly in tune with the neurotypicals around me, my fault if I reacted to the bullying in elementary school, my fault when I had anger issues, always always always my fault.
Well, screw that. None of us asked to be born with autism. Many of us might not change it, if we had the chance, but that's generally because we feel it makes us who we are. We wouldn't be us without it. You still can't say our autism is our fault, and the consequences that follow it, especially undiagnosed autism, cannot fairly be laid at our feet. Frankly, the fact that neurotypicals don't do well with people being different... that's on you. I imagine most of my readers are good, conscientious folk that do their best to get along with everyone, regardless of diagnosis... but I'm afraid my experience is that people like that are a very small minority.
But you know, even knowing that it's not our fault, those of us with sufficient awareness almost always carry, deep inside of us, the unshakable knowledge that it is our fault. All of it, always. Wonder no more why the depression rate is so high in people with autism. This, and many other reasons, is why.
The other major thought I have on the contents of this book is this: the author calls out her single biggest problem in life as her sensory processing problems. The sounds of the world were full of static, the sunlight itself hurt, textures and tastes of food revolted her, etc. That is definitely a huge problem in trying to function in society, and the cause of a great deal of suffering, frustration, and misunderstandings. However... I think she's missing a near-equal difficulty.
Autism can make us rigid of thought and action. The author of this book, at least as portrayed here, strikes me as intensely rigid in those things. Everything had to be just so, there was one right way to do things, etc. Which is very unfortunate, because life itself requires flexibility, or bad consequences tend to ensue. If the author had been able to shake her black and white thinking, she might have been saved a lot of frustration. Some people just prefer to do things in ways that don't make sense, or only make sense if you really understand their lives and experiences.
A point of interest: the book is peppered with quotes, either from family members (often negative, sadly) or from influential people of various stripes. I do wonder how they got those familial quotes, given that the author's parents sort of fade out of the story after college. Perhaps they didn't need to reference the actual people, and it's as simple as all that negativity was burned into the author's brain.
My final comment on the book is that it's deeply saddening. Everything is negative. The hardships and struggles are all listed there, the failures, the depression, the miscommunications, everything. But there is no bright point to this story, beyond, "and then I got my diagnosis and everything made sense." You have no real sense for the author's strengths, or what people liked about her. There was only her failures, her lack of true theory of mind, her sensory problems, her mistakes. The book only comments on her autistic focus as something that made her able to do things. Even her resilience isn't really celebrated, save for one point at the start of the book.
Yet that can't be the whole story. A man married her, and stayed married to her despite the trials of putting up with her. They have children, who I can only hope still love their mother, strange though she might be. Surely this isn't the beginning and end of it. But nothing is said of her good points, only her bad ones.
That is, at least to me, reflective of the general public's viewpoint of autistic people, and people with mental difficulties and differences. There is no celebration of our strengths, of our great gifts, of our unique perspectives. There is only the deficits: "you don't do this," and "you can't see this," and failure after failure after failure.
Be warned: this is not a happy book, humorous title or no. This is, if the title didn't make it obvious, the story of a 1st generation autistic person who entirely missed being diagnosed and understood. The results, predictably, were painful for everyone involved.
Autism, like most mental differences/disabilities, is invisible. Meaning, if you passed me in the grocery store and got a good look at me, you wouldn't be able to tell I'm autistic. That simple fact makes people a great deal less sympathetic to my difficulties, because, as the phrase goes, "Seeing is believing." To that phrase I would add its counterpoint: "Not seeing is almost always disbelieving."
There are some few wonderful tales of people rising above their misunderstandings, of simply accepting the odd or unusual person for themselves, and that person then making their way in life, not too scarred or battered. This is not one of those stories.
The very first page of chapter one screamed familiarity at me. It's a series of her traits, and how people labeled her, since they had no understanding of autism to correctly understand what was going on. Descriptive words like "ballerina" are in that list, but much more commonly are negative words: inconsiderate, obnoxious, hard-headed, picky. And as she points out, everything was consistently, in the eyes of others, her fault. Always her fault. This is very common. And wrong.
I can say with certainty that the blame is always placed (thrown, really) at our (autistic) feet. It was my fault if I wasn't perfectly in tune with the neurotypicals around me, my fault if I reacted to the bullying in elementary school, my fault when I had anger issues, always always always my fault.
Well, screw that. None of us asked to be born with autism. Many of us might not change it, if we had the chance, but that's generally because we feel it makes us who we are. We wouldn't be us without it. You still can't say our autism is our fault, and the consequences that follow it, especially undiagnosed autism, cannot fairly be laid at our feet. Frankly, the fact that neurotypicals don't do well with people being different... that's on you. I imagine most of my readers are good, conscientious folk that do their best to get along with everyone, regardless of diagnosis... but I'm afraid my experience is that people like that are a very small minority.
But you know, even knowing that it's not our fault, those of us with sufficient awareness almost always carry, deep inside of us, the unshakable knowledge that it is our fault. All of it, always. Wonder no more why the depression rate is so high in people with autism. This, and many other reasons, is why.
The other major thought I have on the contents of this book is this: the author calls out her single biggest problem in life as her sensory processing problems. The sounds of the world were full of static, the sunlight itself hurt, textures and tastes of food revolted her, etc. That is definitely a huge problem in trying to function in society, and the cause of a great deal of suffering, frustration, and misunderstandings. However... I think she's missing a near-equal difficulty.
Autism can make us rigid of thought and action. The author of this book, at least as portrayed here, strikes me as intensely rigid in those things. Everything had to be just so, there was one right way to do things, etc. Which is very unfortunate, because life itself requires flexibility, or bad consequences tend to ensue. If the author had been able to shake her black and white thinking, she might have been saved a lot of frustration. Some people just prefer to do things in ways that don't make sense, or only make sense if you really understand their lives and experiences.
A point of interest: the book is peppered with quotes, either from family members (often negative, sadly) or from influential people of various stripes. I do wonder how they got those familial quotes, given that the author's parents sort of fade out of the story after college. Perhaps they didn't need to reference the actual people, and it's as simple as all that negativity was burned into the author's brain.
My final comment on the book is that it's deeply saddening. Everything is negative. The hardships and struggles are all listed there, the failures, the depression, the miscommunications, everything. But there is no bright point to this story, beyond, "and then I got my diagnosis and everything made sense." You have no real sense for the author's strengths, or what people liked about her. There was only her failures, her lack of true theory of mind, her sensory problems, her mistakes. The book only comments on her autistic focus as something that made her able to do things. Even her resilience isn't really celebrated, save for one point at the start of the book.
Yet that can't be the whole story. A man married her, and stayed married to her despite the trials of putting up with her. They have children, who I can only hope still love their mother, strange though she might be. Surely this isn't the beginning and end of it. But nothing is said of her good points, only her bad ones.
That is, at least to me, reflective of the general public's viewpoint of autistic people, and people with mental difficulties and differences. There is no celebration of our strengths, of our great gifts, of our unique perspectives. There is only the deficits: "you don't do this," and "you can't see this," and failure after failure after failure.
Read This Book If
You wonder why diagnosis is so important, or want to see through a very different pair of eyes. But be warned, this is a very sad story, with an only middlingly positive ending. This story also, at least to me, underlines how incredibly important it is to balance all the negative feedback with celebration of the autistic person's positives and strengths. Otherwise, you get... this story.
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