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I Have Been Buried Under Years of Dust: A Memoir of Autism and Hope
A remarkable memoir by a mother and her autistic daughter who’d long been unable to communicate—until a miraculous breakthrough revealed a young woman with a rich and creative interior life, a poet, who’d been trapped inside for more than two decades.
“I have been buried under years of dust and now I have so much to say.” These were the first words twenty-five-year-old Emily Grodin ever wrote. Born with nonverbal autism, Emily’s only means of communicating for a quarter of a century had been only one-word responses or physical gestures. That Emily was intelligent had never been in question—from an early age she’d shown clear signs that she understood what was going on though she could not express herself. Her parents, Valerie and Tom, sought every therapy possible in the hope that Emily would one day be able to reveal herself. When this miraculous breakthrough occurred, Emily was finally able to give insight into the life, frustrations, and joys of a person with autism. She could tell her parents what her younger years had been like and reveal all the emotions and intelligence residing within her; she became their guide into the autistic experience. Told by Valerie, with insights and stories and poetry from Emily, I Have Been Buried Under Years of Dust highlights key moments of Emily’s childhood that led to her communication awakening—and how her ability rapidly accelerated after she wrote that first sentence. As Valerie tells her family’s story, she shares the knowledge she’s gained from working as a legal advocate for families affected by autism and other neurological disorders. A story of unconditional love, faith in the face of difficulty, and the grace of perseverance and acceptance, I Have Been Buried Under Years of Dust is an evocative and affecting mother-daughter memoir of learning to see each other for who they are.
“I have been buried under years of dust and now I have so much to say.” These were the first words twenty-five-year-old Emily Grodin ever wrote. Born with nonverbal autism, Emily’s only means of communicating for a quarter of a century had been only one-word responses or physical gestures. That Emily was intelligent had never been in question—from an early age she’d shown clear signs that she understood what was going on though she could not express herself. Her parents, Valerie and Tom, sought every therapy possible in the hope that Emily would one day be able to reveal herself. When this miraculous breakthrough occurred, Emily was finally able to give insight into the life, frustrations, and joys of a person with autism. She could tell her parents what her younger years had been like and reveal all the emotions and intelligence residing within her; she became their guide into the autistic experience. Told by Valerie, with insights and stories and poetry from Emily, I Have Been Buried Under Years of Dust highlights key moments of Emily’s childhood that led to her communication awakening—and how her ability rapidly accelerated after she wrote that first sentence. As Valerie tells her family’s story, she shares the knowledge she’s gained from working as a legal advocate for families affected by autism and other neurological disorders. A story of unconditional love, faith in the face of difficulty, and the grace of perseverance and acceptance, I Have Been Buried Under Years of Dust is an evocative and affecting mother-daughter memoir of learning to see each other for who they are.
272 pages, Hardcover
First published April 6, 2021
109 people are currently reading
3835 people want to read
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Displaying 1 - 30 of 183 reviews
May 1, 2021
As someone who is autistic and has autistic family, this book was awful to read. In short, it's a narcissistic mother -- an "autism mommy" trope personified -- who is hung up on making her daughter "normal."
To be clear, Emily's portions were lovely and revealed her intelligent, compassionate voice. Emily has varied interests including travel, history, and law. I hope she goes far in life! Emily is a poet, has an instagram, and if she ever writes her own book I'll be eager to read it.
That said, the one star is for Valerie's writing. As another reviewer mentioned, her lack of self-awareness and her focus on making Emily "normal" not only got in the way of Emily's development but actively held her back. Valerie was so focused on development of spoken language as a marker of Emily's success that she actually intentionally prevented Emily from using AAC or other communication methods during her earlier years. Let me say that again: Emily wanted to communicate via alternative methods and wasn't allowed... unless she used spoken word. Emily's "breakthrough" wasn't that she could suddenly type when she wasn't able to before. It's that Valerie finally LET her type. After decades of not listening to Emily.
To Valerie, Emily is "unknowable" and a surprise. That's because Valerie isn't listening. In fact, Valerie says similar things about her husband who is presumably neurotypical (i.e., there's a chapter where she talks about her surprise that he does, in fact, also have emotions). Valerie's narcissistic traits shine through, and although she frames herself as a hero who sacrificed it all for her daughter, it's clear that her relationships with family, friends, school staff, and the community at large are fraught because Valerie is getting in the way time and time again.
Valerie lies about Emily's condition because she's ashamed to reveal that her daughter is autistic. She forces Emily through ABA treatment and instead of stopping when Emily cries from frustration she leaves the room because she doesn't want to watch. She drags Emily into overwhelming situations and is shocked when Emily is, well, overwhelmed. Emily is openly blamed for Valerie's lack of friends. Valerie announces the world that Emily is the reason Valerie's dreams of having a second child were crushed. Emily deserved better.
Please, if you care about the autistic community and want to hear about our experiences, know that there are better resources out there. Check out the Autistic Self Advocacy Network or the Autistic Women and Nonbinary Network. Check out books by and for the autistic community: Neurotribes (Steve Silberman), Aspergirls (Rudy Simone), Spectrum Women (Barb Cook and Michelle Garnett), Knowing Why (Elizabeth Bartmess), The Reason I Jump (Naoki Higashida), Uncomfortable Labels (Laura Kate Dale).
To be clear, Emily's portions were lovely and revealed her intelligent, compassionate voice. Emily has varied interests including travel, history, and law. I hope she goes far in life! Emily is a poet, has an instagram, and if she ever writes her own book I'll be eager to read it.
That said, the one star is for Valerie's writing. As another reviewer mentioned, her lack of self-awareness and her focus on making Emily "normal" not only got in the way of Emily's development but actively held her back. Valerie was so focused on development of spoken language as a marker of Emily's success that she actually intentionally prevented Emily from using AAC or other communication methods during her earlier years. Let me say that again: Emily wanted to communicate via alternative methods and wasn't allowed... unless she used spoken word. Emily's "breakthrough" wasn't that she could suddenly type when she wasn't able to before. It's that Valerie finally LET her type. After decades of not listening to Emily.
To Valerie, Emily is "unknowable" and a surprise. That's because Valerie isn't listening. In fact, Valerie says similar things about her husband who is presumably neurotypical (i.e., there's a chapter where she talks about her surprise that he does, in fact, also have emotions). Valerie's narcissistic traits shine through, and although she frames herself as a hero who sacrificed it all for her daughter, it's clear that her relationships with family, friends, school staff, and the community at large are fraught because Valerie is getting in the way time and time again.
Valerie lies about Emily's condition because she's ashamed to reveal that her daughter is autistic. She forces Emily through ABA treatment and instead of stopping when Emily cries from frustration she leaves the room because she doesn't want to watch. She drags Emily into overwhelming situations and is shocked when Emily is, well, overwhelmed. Emily is openly blamed for Valerie's lack of friends. Valerie announces the world that Emily is the reason Valerie's dreams of having a second child were crushed. Emily deserved better.
Please, if you care about the autistic community and want to hear about our experiences, know that there are better resources out there. Check out the Autistic Self Advocacy Network or the Autistic Women and Nonbinary Network. Check out books by and for the autistic community: Neurotribes (Steve Silberman), Aspergirls (Rudy Simone), Spectrum Women (Barb Cook and Michelle Garnett), Knowing Why (Elizabeth Bartmess), The Reason I Jump (Naoki Higashida), Uncomfortable Labels (Laura Kate Dale).
May 3, 2021
Imagine that your child finds her voice literally and figuratively after more than two decades of her life. What a breakthrough!
This is a true story of a mother’s refusal to give up on her daughter with nonverbal autism.
I am so moved reading this well written memoir as Valerie recounts her life as a mother of an autistic child, advocating for the rights of her neuro diverse daughter Emily, while navigating the complex and challenging medical and school system. More than a memoir, this book taught me a lot as a nurse about the diagnosis, the current research, and the controversial treatments and interventions for autism.
Within the chapters are italicized entries by Emily as she finds her voice through a technique called facilitated communication by typing on an iPad to express her thoughts. Her first words are the title of this book, and as her mother knew all along, Emily was smart and capable of so much more than what people give her credit for behind her diagnosis. Emily is not only succeeding extremely well in college here in Los Angeles, but is also an emerging poet whose writing is powerful, brilliant and heartfelt.
This is a true story of a mother’s refusal to give up on her daughter with nonverbal autism.
I am so moved reading this well written memoir as Valerie recounts her life as a mother of an autistic child, advocating for the rights of her neuro diverse daughter Emily, while navigating the complex and challenging medical and school system. More than a memoir, this book taught me a lot as a nurse about the diagnosis, the current research, and the controversial treatments and interventions for autism.
Within the chapters are italicized entries by Emily as she finds her voice through a technique called facilitated communication by typing on an iPad to express her thoughts. Her first words are the title of this book, and as her mother knew all along, Emily was smart and capable of so much more than what people give her credit for behind her diagnosis. Emily is not only succeeding extremely well in college here in Los Angeles, but is also an emerging poet whose writing is powerful, brilliant and heartfelt.
January 19, 2021
This book is co-written by Emily, an autistic woman in her twenties, and her mother, Valerie, an attorney. Nonverbal and subject to meltdowns for most of her life, Emily started communicating on an iPad in her mid-twenties. I would have preferred it if the authors had provided section headings identifying the speaker as either Valerie and Emily. The book was thought-provoking--I wondered what would happen to an autistic individual whose parents weren't wealthy. Thanks to Edelweiss and the publisher for this ARC.
May 31, 2021
No just no. Once again this is another ‘ohh no look at me I’m so sad but also so strong because I have an autistic child’ book....
As someone who has been diagnosed with autism I’m so sick of seeing books/media like this.
As someone who has been diagnosed with autism I’m so sick of seeing books/media like this.
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June 8, 2021My reactions to this book, and to others' reactions to this book, are all over the place.
- It was great to read the writing of a nonverbal autistic author. In addition to granting so much insight, it made me reflect on my own impressions of nonverbal people. I'm very grateful for this.
-I also appreciate Valerie's insight and honesty. It's interesting to me to read some of the loathing toward her in reviews. I'm reading NeuroTribes: The Legacy of Autism and the Future of Neurodiversity concurrently and the recent history of therapies for autistic people seems to have changed drastically during Emily's lifetime. My understanding is that Valerie was told by experts not to promote FC earlier. I thought she also talked about mistakes or regrets she had. At the same time, there is a lot of discussion of being "normal" and the desire for Emily not to have been the way she was, at least prior to FC. I can see how this can be divisive.
- I found Emily's entries most interesting and would have liked to have learned about more of her reflections - there seemed to me to be gaps in discussions of her childhood. Maybe she will have a standalone memoir!
- It was great to read the writing of a nonverbal autistic author. In addition to granting so much insight, it made me reflect on my own impressions of nonverbal people. I'm very grateful for this.
-I also appreciate Valerie's insight and honesty. It's interesting to me to read some of the loathing toward her in reviews. I'm reading NeuroTribes: The Legacy of Autism and the Future of Neurodiversity concurrently and the recent history of therapies for autistic people seems to have changed drastically during Emily's lifetime. My understanding is that Valerie was told by experts not to promote FC earlier. I thought she also talked about mistakes or regrets she had. At the same time, there is a lot of discussion of being "normal" and the desire for Emily not to have been the way she was, at least prior to FC. I can see how this can be divisive.
- I found Emily's entries most interesting and would have liked to have learned about more of her reflections - there seemed to me to be gaps in discussions of her childhood. Maybe she will have a standalone memoir!
June 11, 2021
No. I found this book to be wildly unhelpful. Valerie, as many have noted, centers her struggles (and literally endless resources) with her daughter, as she strives to gain a sense of "normalcy" with her autism. I struggle so much in my reflection of this book as an educator, because I know how challenging it can be as a teacher with limited resources, supports, money, tech, etc. when working in classrooms. I don't doubt her stories or experiences, I just wish that instead of harping on the education system, she perhaps considered that there are actually people out there that solely depend on school as a support system, and cannot just move their students and children to new therapists, settings, new FC communicators, and the like. I really breezed through the last chapter because I wasn't super interested in reading about their SECOND trip to Europe and how it compared to the first one. This whole book absolutely reeked of privilege, No thank you. Emily is a very talented writer and poet, and I hope that she continues to find independence. I would also really love to read a book written wholly by Emily.
I was so sad to read that mom, even up until the very end of the book, saw her verbal communication as the ultimate marker of success. In contrast, I really love the book "How Can I Talk If My Lips Don't Move" by Tito Mukhopadhyay.
I was so sad to read that mom, even up until the very end of the book, saw her verbal communication as the ultimate marker of success. In contrast, I really love the book "How Can I Talk If My Lips Don't Move" by Tito Mukhopadhyay.
September 22, 2021
Emily’s writing 5/5
Valerie’s writing 0/5
Valerie’s writing 0/5
July 12, 2021
I read this book because of a recommendation from Amazon. I was happy to find it as a digital download from the library.
I started reading with great interest since Emily is around the same age as my daughter. Much of Valerie's beginning search was so familiar to me. The top doctors and treatments were the same I read about when my daughter was young. The difference is that I didn't have the means to seek out these doctors or treatments that Valerie was able to.
When my child was very young I tried doing the ABA program myself. I could not afford any help. I found it to be too structured and tedious for a small child. It almost felt cruel. The program didn't seem like it was working either. I felt guilty for giving up on it at the time. Now, I feel that it is aimed at making the child "normal", which is of course not possible or desirable. So I agree with Valerie about ABA but for different reasons.
Valerie also mentioned how isolating having a child with autism is. She said that family and friends tend to distance themselves. Her family became a singular unit dealing with the diagnosis. I have also found this to be true.
Valerie's insights about the early years of Emily's schooling also rang true to me. Yes, often times the more inclusive, kind kids are from lower means. Wealthy kids often behave in a more entitled, snarky way.
It's also true that mainstreaming is not always what it's made out to be to parents. It can be awesome with the right teacher, but sadly many teachers don't want to take on the added responsibility. It's better for the child to be with a teacher trained in autism who understands the child in a small classroom with trained aides for support, than having a child in a large mainstream classroom neglected in a seat in the back.
Every kid with autism is different and has their own needs. No school program is perfect. Most schools do try to place children in the best programs. My feeling is that if the parents are involved and caring, and explore the best options, things will work out.
Working out doesn't mean your child will be cured. There's no magic with developmental disabilities. Amazing improvement happens. My child made tremendous strides. Greater than anyone ever imagined. But there is no cure or magic.
This brings me to my concerns about this book. I believe in science. Science does not support Facilitated Communication. I've watched Sue Rubin's movie "Autism is a World". I read Carly Fleischman's father's book and seen her videos. I have not seen anything that convinces me of the merits of FC.
Valerie mentions her concerns and is up front about other people's doubts about FC. I appreciate her honesty in mentioning the controversy. I will not dismiss something that she believes helps Emily. At the same time I'd warn anyone who wishes to try FC to be very careful.
Not everyone is going to be a scholar or a poet. Love your child for who they are. Accept them for who they are. Being a parent is a gift.
I started reading with great interest since Emily is around the same age as my daughter. Much of Valerie's beginning search was so familiar to me. The top doctors and treatments were the same I read about when my daughter was young. The difference is that I didn't have the means to seek out these doctors or treatments that Valerie was able to.
When my child was very young I tried doing the ABA program myself. I could not afford any help. I found it to be too structured and tedious for a small child. It almost felt cruel. The program didn't seem like it was working either. I felt guilty for giving up on it at the time. Now, I feel that it is aimed at making the child "normal", which is of course not possible or desirable. So I agree with Valerie about ABA but for different reasons.
Valerie also mentioned how isolating having a child with autism is. She said that family and friends tend to distance themselves. Her family became a singular unit dealing with the diagnosis. I have also found this to be true.
Valerie's insights about the early years of Emily's schooling also rang true to me. Yes, often times the more inclusive, kind kids are from lower means. Wealthy kids often behave in a more entitled, snarky way.
It's also true that mainstreaming is not always what it's made out to be to parents. It can be awesome with the right teacher, but sadly many teachers don't want to take on the added responsibility. It's better for the child to be with a teacher trained in autism who understands the child in a small classroom with trained aides for support, than having a child in a large mainstream classroom neglected in a seat in the back.
Every kid with autism is different and has their own needs. No school program is perfect. Most schools do try to place children in the best programs. My feeling is that if the parents are involved and caring, and explore the best options, things will work out.
Working out doesn't mean your child will be cured. There's no magic with developmental disabilities. Amazing improvement happens. My child made tremendous strides. Greater than anyone ever imagined. But there is no cure or magic.
This brings me to my concerns about this book. I believe in science. Science does not support Facilitated Communication. I've watched Sue Rubin's movie "Autism is a World". I read Carly Fleischman's father's book and seen her videos. I have not seen anything that convinces me of the merits of FC.
Valerie mentions her concerns and is up front about other people's doubts about FC. I appreciate her honesty in mentioning the controversy. I will not dismiss something that she believes helps Emily. At the same time I'd warn anyone who wishes to try FC to be very careful.
Not everyone is going to be a scholar or a poet. Love your child for who they are. Accept them for who they are. Being a parent is a gift.
November 30, 2021
I read about a quarter of this book after thinking the description sounded enticing. It was horrible, unbearable. The mother is incredibly ableist.
The author's disdain for her autistic daughter is so strong throughout her descriptions of how much she as a mother struggled with an autistic child. I was hoping it would be only Emily's story and her perspectives on her lived experiences. Apparently, too much to ask. I'm honestly so angry thinking about how much this mother sounded like she was given such a big burdern by having an autistic child. She lacks empathy.
Emily's excerpts throughout were. . .lacking. She sounded like an amazing lady, who was stuck with a mother who did not love her the way she deserved. They (the excerpts) reeked to me as a sense of internalized ableism from not being able to express herself in the way she did (and be understood).
I, honestly, had to stop reading after the mother was talking about putting Emily through ABA therapy for 20h a week and I could not stand how they treated her like a dog. Emily was miserable.
She deserved better.
Horrible book. Lacks authentic autistic voicing. Felt a bit. . .exploitive of Emily and her experiences.
The author's disdain for her autistic daughter is so strong throughout her descriptions of how much she as a mother struggled with an autistic child. I was hoping it would be only Emily's story and her perspectives on her lived experiences. Apparently, too much to ask. I'm honestly so angry thinking about how much this mother sounded like she was given such a big burdern by having an autistic child. She lacks empathy.
Emily's excerpts throughout were. . .lacking. She sounded like an amazing lady, who was stuck with a mother who did not love her the way she deserved. They (the excerpts) reeked to me as a sense of internalized ableism from not being able to express herself in the way she did (and be understood).
I, honestly, had to stop reading after the mother was talking about putting Emily through ABA therapy for 20h a week and I could not stand how they treated her like a dog. Emily was miserable.
She deserved better.
Horrible book. Lacks authentic autistic voicing. Felt a bit. . .exploitive of Emily and her experiences.
February 25, 2021
This is the story of 2 articulate people, mother and daughter and the handicap that is the autism spectrum.Mother is an attorney who fights for the proper educational services for students who need them in order to thrive. Sadly, it often takes strong financial stability in order to afford advocacy in some circumstances, many perhaps. Many families are forced or feel forced to take what is offered them by school districts that are only trying to balance their budgets on students' futures,,,,,,,,,the easiest comment I can make of this widespread practice is that it is sad. Doubtlessly Valerie has improved the lives of many with her experience and knowledge.
Back to the book, the story is gripping, daughter's insights are compelling, it is all clearly written and flows. It is a piece of advocacy addressed to those who do not understand the spectrum. That being said I must point out that Valerie's daughter, our co-author, is articulate and intelligent, and she is the compelling second voice in this book, second but not lesser.
Back to the book, the story is gripping, daughter's insights are compelling, it is all clearly written and flows. It is a piece of advocacy addressed to those who do not understand the spectrum. That being said I must point out that Valerie's daughter, our co-author, is articulate and intelligent, and she is the compelling second voice in this book, second but not lesser.
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May 27, 2021“I have felt the storm within me. The storm of things unsaid.
The crippling weight of thoughts
Emotions
Opinions
That can’t quite make it to the surface.
I have had to find other ways. Other ways to make them heard.
Ways to let the world see that I am thinking, and breathing, and experiencing just as the rest.
My mind is a constant whirlwind, pondering rapidly on everything, and nothing.”
The crippling weight of thoughts
Emotions
Opinions
That can’t quite make it to the surface.
I have had to find other ways. Other ways to make them heard.
Ways to let the world see that I am thinking, and breathing, and experiencing just as the rest.
My mind is a constant whirlwind, pondering rapidly on everything, and nothing.”
July 23, 2023
I hope that Emily never had the chance to read the entire book. Despite Emily saying she was never made to feel like a burden, from the mothers writing it is clear that Emily felt like a burden in her life.
What could have been a tale told mainly from Emily’s perspective was instead 90% her mom patting herself on the back
A similar story to Emily’s without the self-insertion of a narcissistic mother would be “The Reason I Jump” by Naoki Higashida
What could have been a tale told mainly from Emily’s perspective was instead 90% her mom patting herself on the back
A similar story to Emily’s without the self-insertion of a narcissistic mother would be “The Reason I Jump” by Naoki Higashida
December 29, 2021
An incredible memoir of a young woman with autism who is nonverbal. As a former educator, I found this book so educational and insightful. I loved reading her story! I highly recommend it to everyone to build understanding and acceptance.
August 12, 2021
I have to give this memoir a lot of credit. I have been studying Early Childhood Education for a number of years, I’ve taken various courses on disabilities and inclusion, and I’ve worked with children with autism before. I am college educated in ECE. I’m not an expert by any means, but I consider myself well versed in knowledge of people with autism. And this book taught me so much that I’ve never heard of. I learned so much about facilitated communication. Of course I had heard of it, but I feel it’s not covered nearly enough because of the controversy behind it. Emily’s story was so extraordinary, I almost didn’t believe it until I kept reading. For her to just come out and start communicating eloquently and with so much artistic ability at age 25 amazed me. I was convinced by a simple statement from Emily’s mother, where she discussed how Emily didn’t do things until she was ready, because she was just that type of person. I am the exact same way. Neurotypical or not, we all are people with personality traits, so that made perfect sense to me. Emily communicated when she felt ready. I highly recommend this memoir to anyone who is interested in learning more about autism and facilitated communication. Emily’s story will truly change everything you thought you already knew.
August 3, 2023
DNF before page 100.
The problem, for me, is how incredibly privileged this family is. Both parents (are still together!) and are lawyers, or something. So, they have a lot of money to spend on different potential therapies. The author acknowledges that her family's position is uncommon, and they touch on some great things. I just stopped reading because I didn't find this to be reflective of the experiences in my community.
The problem, for me, is how incredibly privileged this family is. Both parents (are still together!) and are lawyers, or something. So, they have a lot of money to spend on different potential therapies. The author acknowledges that her family's position is uncommon, and they touch on some great things. I just stopped reading because I didn't find this to be reflective of the experiences in my community.
June 13, 2023
Picked this book up on a whim at the library- the cover caught my attention and I was in the mood for a memoir. This book was incredible- hearing Valerie’s thoughts as a mother and then having Emily reveal everything that was and is going through her head. really emotional at some parts, and overall inspiring. I devoured this book, read it all in one sitting.
April 24, 2025
valerie and RFK should be besties bc fuck them both
July 19, 2023
This book should have been mostly Emily’s words with some context provided from Valerie. Emily has beautiful thoughts and shared her struggles with such vulnerability that I appreciated. Instead of learning of Emily’s experience by way of Emily, we heard Valerie play the victim in this situation for 3/4 of the book. Specifically for me, I couldn’t accept Valerie speaking poorly about others or situations when they weren’t working in her favor, only to praise them later when they benefitted her.
December 21, 2020
*Thank you to Netgalley and the publisher for an egalley ARC out in April 2021.
The description of this story interested me right away. The journey Emily and her family went on and are still going through of navigating nonverbal autism was very compelling, and I am thankful for the opportunity to read it.
This is a memoir co-written by Emily’s mother and Emily who is nonverbal autistic. The main narrative is told by her mother, with insight and poetry throughout
by Emily. Emily’s poetry and writing was definitely was the highlight for me.
The overall story paints a picture of Emily’s journey of finding her voice and sharing her experience of the world. Through most of her childhood she is not able to communicate beyond simple answers to questions, though her parents believe there is more going on inside her than she can communicate. After trying many different therapies, through FC she has a breakthrough one day and Emily writes full sentences describing her thoughts and feelings for the first time.
I know there is a saying in the autistic community that says something like when you have met one autistic person you have met one autistic person. Each person’s experience with autism is unique. This is how I think of Emily’s story. It is not meant to say “follow this path” and other autistic people can be like me. Rather it tells a story that advocates for more options beyond speech therapy for nonverbal autistic children.
FC (Facilitated Communication) has been seen as illegitimate form of communication for autistic people, but Emily and her mother want to share their positive experience with it and advocate for all forms of AAC (Augmentative & Alternative Communication) to be a recognized option for nonverbal autistic people.
Emily’s poetry and insight to what it is like to navigate the world as autistic along with her mother’s narrative has given me a lot to think about as a teacher, mother, and human in this world we all share.
The description of this story interested me right away. The journey Emily and her family went on and are still going through of navigating nonverbal autism was very compelling, and I am thankful for the opportunity to read it.
This is a memoir co-written by Emily’s mother and Emily who is nonverbal autistic. The main narrative is told by her mother, with insight and poetry throughout
by Emily. Emily’s poetry and writing was definitely was the highlight for me.
The overall story paints a picture of Emily’s journey of finding her voice and sharing her experience of the world. Through most of her childhood she is not able to communicate beyond simple answers to questions, though her parents believe there is more going on inside her than she can communicate. After trying many different therapies, through FC she has a breakthrough one day and Emily writes full sentences describing her thoughts and feelings for the first time.
I know there is a saying in the autistic community that says something like when you have met one autistic person you have met one autistic person. Each person’s experience with autism is unique. This is how I think of Emily’s story. It is not meant to say “follow this path” and other autistic people can be like me. Rather it tells a story that advocates for more options beyond speech therapy for nonverbal autistic children.
FC (Facilitated Communication) has been seen as illegitimate form of communication for autistic people, but Emily and her mother want to share their positive experience with it and advocate for all forms of AAC (Augmentative & Alternative Communication) to be a recognized option for nonverbal autistic people.
Emily’s poetry and insight to what it is like to navigate the world as autistic along with her mother’s narrative has given me a lot to think about as a teacher, mother, and human in this world we all share.
May 2, 2021
3.5 stars. Toward the end it's mentioned that Emily was fascinated with London because of hearing about it when she was five. If her memory serves so well, I would have loved to hear Emily's perceptions of her childhood in the earlier chapters.
April 19, 2022
Like many others who have reviewed this work, I would have preferred more time with Emily and less time with Valerie. I agree that there were quite a few moments, in which, this book felt like it was more about Valerie and her experience raising a neurodivergent child and less about Emily's own experience, and frankly the book suffered because of it. There were times where I felt that Valerie, regardless of her intentions, was using Emily as a stepping stone to fame and money.
Further, I felt that Valerie didn't really give a fair perspective on the behavioral therapists, early in the book. She talks about them being cold and unfeeling, and not treating her daughter like a person. However, as someone who works professionally in SPED, I can guarantee that, that is far from the truth. Most behaviorists/ABA professionals love the kids they work with, care about them deeply, and want to see them grow to become their best selves. Many ABA professionals cheer and celebrate every success. We celebrate with you and with them for every step they take towards being the person they want to be and are capable of becoming. We chart data in order to assess capacity, evaluate and make changes. Data is necessary for us to determine what our next step should be. Data is collected at every level of education, not just SPED. It is the same in many scientific pursuits and it is necessary for evidence based practices.
Is ABA perfect? No of course not, but what is? It's important to realize that ABA therapy is growing, changing and always incorporating new therapies. Like any growing practice some of these growing pains can be hard, but the important thing to remember is that we are always growing and learning and improving based on data supported evidence. Are there ABA professionals who are flawed? Sure, we're human after all. Is ABA right for every neurodivergent individual? No, it's not. Does it deserve a bad reputation? No, not inherently; Choosing the right therapy method is a matter of exploration, research trial and error. Like Valerie said herself, every method of therapy is at least worth the effort to try.
Further, I felt that Valerie didn't really give a fair perspective on the behavioral therapists, early in the book. She talks about them being cold and unfeeling, and not treating her daughter like a person. However, as someone who works professionally in SPED, I can guarantee that, that is far from the truth. Most behaviorists/ABA professionals love the kids they work with, care about them deeply, and want to see them grow to become their best selves. Many ABA professionals cheer and celebrate every success. We celebrate with you and with them for every step they take towards being the person they want to be and are capable of becoming. We chart data in order to assess capacity, evaluate and make changes. Data is necessary for us to determine what our next step should be. Data is collected at every level of education, not just SPED. It is the same in many scientific pursuits and it is necessary for evidence based practices.
Is ABA perfect? No of course not, but what is? It's important to realize that ABA therapy is growing, changing and always incorporating new therapies. Like any growing practice some of these growing pains can be hard, but the important thing to remember is that we are always growing and learning and improving based on data supported evidence. Are there ABA professionals who are flawed? Sure, we're human after all. Is ABA right for every neurodivergent individual? No, it's not. Does it deserve a bad reputation? No, not inherently; Choosing the right therapy method is a matter of exploration, research trial and error. Like Valerie said herself, every method of therapy is at least worth the effort to try.
May 25, 2024
Emily’s chapters were beautiful and sweet. They really allowed a look into her mind. Her story of overcoming deserves to be told and I liked that they included some of her poetry. I was expecting and hoping that this book would be told in the majority from Emily’s POV. Unfortunately, that’s not the case.
The mom as narrator was insufferable and it really did a disservice to the story to have so much of it from her POV. I wish she would have recognized the growth of knowledge in teaching/working with students with Autism over the last 20+ years, but instead she just trashes basically every teacher and school they came in contact with over the years. Every parent should advocate for their child, but bragging multiple times over how many times you sued the school district isn’t it. Everyone is entitled to their POV of how a situation was handled, so I won’t go into anymore of my thoughts on the mother here.
If this wasn’t a Book Club pick, I would have quit halfway. I’m glad I pushed through because Emily’s breakthrough was really powerful, but this book was definitely not what I was hoping it would be.
The mom as narrator was insufferable and it really did a disservice to the story to have so much of it from her POV. I wish she would have recognized the growth of knowledge in teaching/working with students with Autism over the last 20+ years, but instead she just trashes basically every teacher and school they came in contact with over the years. Every parent should advocate for their child, but bragging multiple times over how many times you sued the school district isn’t it. Everyone is entitled to their POV of how a situation was handled, so I won’t go into anymore of my thoughts on the mother here.
If this wasn’t a Book Club pick, I would have quit halfway. I’m glad I pushed through because Emily’s breakthrough was really powerful, but this book was definitely not what I was hoping it would be.
September 14, 2021
Ultimately, I really enjoyed reading this book.
It was aimed at parents, which became clear soon, but it was an extremely honest and bare-faced account of raising an autistic daughter, from a mom who genuinely loves her child. It truly is a jungle out there for parents who have just found out they have an autistic child, I will never deny this, stigma is so powerful, and what I really want from parents, most of all, is to put their children's happiness and health before everything else. Valerie has done this. She fought her own social biases to give her daughter a good life, and then she published a memoir to maybe lead other parents away from the pitfalls she fell into, and contribute to the literature depicting the way that facilitated communication can open up the world for autistic people.
It was aimed at parents, which became clear soon, but it was an extremely honest and bare-faced account of raising an autistic daughter, from a mom who genuinely loves her child. It truly is a jungle out there for parents who have just found out they have an autistic child, I will never deny this, stigma is so powerful, and what I really want from parents, most of all, is to put their children's happiness and health before everything else. Valerie has done this. She fought her own social biases to give her daughter a good life, and then she published a memoir to maybe lead other parents away from the pitfalls she fell into, and contribute to the literature depicting the way that facilitated communication can open up the world for autistic people.
June 11, 2021
This memoir is co-written by Emily, autistic, and her mother Valerie Gilpeer.
It is two sides to living with autism and caring for an autistic daughter from
a small child to adulthood. A complete chaos of family life given Emily's
turbulent emotional fits and meltdowns, screaming, no verbal skills with
not much hope of ever being verbal. Finally, at age 25 Emily is instructed in
Facilitated Speech on a computer with an instruction aide. She takes to it
and is able to write prose and even poetry. Although always with her aide to
assist her work. She had to hold on to Emily's shirt to ground her while she
typed. A frustrating book to encounter and continue throughout the long years'
story. Heartbreaking account of how this young woman struggled to find a
way to communication. A lot of resources, including money, and ineffable
patience and persistence and love was involved in this journey. Published in 2021.
It is two sides to living with autism and caring for an autistic daughter from
a small child to adulthood. A complete chaos of family life given Emily's
turbulent emotional fits and meltdowns, screaming, no verbal skills with
not much hope of ever being verbal. Finally, at age 25 Emily is instructed in
Facilitated Speech on a computer with an instruction aide. She takes to it
and is able to write prose and even poetry. Although always with her aide to
assist her work. She had to hold on to Emily's shirt to ground her while she
typed. A frustrating book to encounter and continue throughout the long years'
story. Heartbreaking account of how this young woman struggled to find a
way to communication. A lot of resources, including money, and ineffable
patience and persistence and love was involved in this journey. Published in 2021.
February 8, 2024
2 stars for Valerie, 4 stars for Emily.
Valerie comes across as a pretentious, holier than thou parent, who is the first and only parent to want nothing but the best for her child, let alone her child who is special needs.
Emily comes across as poetic, promising, and courageous. I wish Emily’s parts were louder and highlighted more of her growth throughout her childhood.
Valerie comes across as a pretentious, holier than thou parent, who is the first and only parent to want nothing but the best for her child, let alone her child who is special needs.
Emily comes across as poetic, promising, and courageous. I wish Emily’s parts were louder and highlighted more of her growth throughout her childhood.
May 25, 2022
An absolute must read. Communication shouldn't be restricted to verbal speech, and I'm grateful that this family found their way to being able to communicate with each other at last. We need to hear more from the voices of nonverbal individuals, and I'm grateful that this book was written.
July 20, 2021
The contents of this book were unexpected and awe-inspiring. It made me reflect a lot my own assumptions about autistic and non-verbal people.
January 26, 2022
I enjoyed this book a lot. I am not autistic and do not have a lot of knowledge about the autistic community, so I found a lot of the information about the process of obtaining quality education with a disability enlightening. I can see why the mother rubbed some people the wrong way, but at the end of the day she was trying to do what she thought was best for her daughter. Overall the memoir was informative and honest and a very quick read.
April 23, 2021
Blessings in a book
I didn’t know I needed to read this book but I’m so glad I did.
A wealth of information and insight. I appreciate the authors sharing their story.
I didn’t know I needed to read this book but I’m so glad I did.
A wealth of information and insight. I appreciate the authors sharing their story.
April 7, 2024
Two stars for the mother’s account of having a child with autism. Some relatable material but I felt greatly saddened for her daughter. I don’t feel as though the mother always acted in the best interest of her daughter. A separate rating would be made for hearing from Emily because her POV was very eye opening to her experience of being autistic.
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