Carly's Voice: Breaking Through Autism

Well written and thoughtfully executed. With this book, father Arthur and daughter Carly Fleischmann have done a great service for anyone trying to get a better understanding of the autistic mind. And for those without autism in their lives, this work provides a window. As the father of a son with autism, I have read extensively in the area of treatment, but of the books that I have read with regard to the day-to-day firsthand account, what the authors provide here is one of the very few which offers substantive material on a single case. This book is unique because it provides thoughts from a coming-of-age autistic girl, but the picture is made complete by a sharing of the joys and sorrows of a father who continually seeks to help one daughter while balancing the needs of siblings, as well as a striving to obtain the best care and education in the midst of societal systems that still do not understand modern day autism. In reading this book, I folded over quite a few dog ears, and what follows is the sharing of some quotes to encourage the potential reader to pick up a copy, especially in light of it going paperback in the near future.In the closing pages of Chapter 1 ("In the Eye of the Storm"), at a stage before Carly received a diagnosis of autism, Arthur comments: "Despite what doctors described in her medical records as 'valiant efforts by her caring and deeply committed parents,' we would never receive an a-ha moment, much as we craved one. One dead-end street led to another. Somehow, life had to move on. Our other kids were growing and developing. We were running out of referrals and recommendations. And while our medical system is public in Canada, many of our therapies and consults were beyond coverage and had pushed our credit line to the brink. 'I feel like there's a button in her brain we just need to switch on,' Tammy said. But that button would remain out of sight, out of reach. In our hearts, we had hoped to find a magic pill that would turn Carly into something else; someone who could speak, play, and be with us. But that folly had come to an end. It's not that we would give up on our daughter, but it was time to stop asking why, and start asking now what?"In Chapter 3 ("Climbing the Well-Greased Ladder") Arthur writes: "Carly's ever-expanding team resembled a Rube Goldberg device - a series of interconnected parts, each serving individual functions, tenuously connected to one another." And later, in Chapter 6 ("It Takes a Village"): "While I was just the line worker, Tammy processed the paperwork for the government so we could be reimbursed for some of the costs of running the full-scale production that was Carly's life. Tammy also managed the HR component of hiring, shift scheduling, and procurement. We called this business of running Carly's life Carly Inc. 'The pay is lousy, but the benefits suck,' Tammy would say ironically. Over her desk in the basement office, which she called 'the dungeon', hung a bumper sticker emblazoned with the quote 'Well-behaved women seldom make history,' by Laurel Thatcher Ulrich (who herself looks remarkably well behaved). This humble office space, no more than a desk with a few basket-style filing drawers, was Carly Inc.'s official headquarters. An African proverb claims that 'it takes a village to raise a child.' But we've found that it takes something far more entrepreneurial."Arthur shares his quest for normality in Chapter 8 ("Uncommon"): "Experts tell us that those afflicted with autism live in their own spheres. Their universe looks odd to us, and ours is overwhelming for them. But the families with autism also live in a netherworld. We are not part of the autistic child's domain, nor are we fully a part of society. I noted that friends could pack up the kids and take off, coming home relaxed and recharged. That would never be us. We lived life as one giant special provision, and it felt like a force field was holding us back from joining in. I just wanted to be normal. Nonexceptional. Not requiring a précis, an introduction, or an explanation. It felt like we always needed an excuse for why we preferred the secluded booth at the back of the restaurant where Carly's noises would go unnoticed. Or an apology for why I was cranky or sleepy in the middle of the day. Or a reason why we couldn't attend an event at someone's house for fear of Carly blowing through the house like Hurricane Rita. Our friends were always welcoming us, but they needn't have worried about our accepting an invitation with Carly. There was nothing restful about a dinner party where Tammy or I were on duty to keep Carly corralled - away from anything that could be stained, broken, or mangled."In Chapter 13 ("Growing, Apart"), after she begins communicating via computer, Carly responds to an inquiry as to why children with autism do not look people in the eye and whether they should be encouraged to do so: "No. We see different than everyone else. We take pictures in our heads like a camera. It's like filling a camera with too many pictures. It gets overwhelming." In discussing another autistic child, Carly is told that a bright five-year-old with autism frequently made noises and repeated phrases or words over and over that he had picked up from watching cartoons, and she is asked whether she has any ideas how to stop this stimming. "That's not stimming. People mix that up with stims but it's not. Stims are when we focus on sensory output to block out sensory input. Knowing myself - and again remember I don't talk, you can't just talk as a stim. It has to be more engaging." After further questioning, Carly notes: "He is audio filtering. We take in over a hundred sounds a minute. We have a hard time processing all the sounds at once so it comes out later as a broken record. Something is setting it off. Smells. Hairstyle. Clothes or sounds can be a trigger. It could be something you are saying or making him do that acts as a trigger. It's the method that reverberates the sentence or words in his head and to filter the meaning he repeats it over and over."Later, Carly writes in Chapter 18 ("Discovery") while fielding questions from a reporter: "It might not seem like I am at times, but I try very hard to act appropriately. It is so tough to do and people think it is easy because they don't know what is going on in my body. They only know how easy it is for them. Even the doctors have told me that I am being silly but they don't get it. If I could stop it, I would. But it is not like turning a switch off. It does not work that way. I know what is right and wrong but it's like I have a fight with my brain over it. Autism feels hard. It's like being in a room with the stereo on full blast. It feels like my legs are on fire and over a million ants are climbing up my arms. It's hard to be autistic because no one understands me. People just look at me and assume that I am dumb because I can't talk or because I act differently than them. I think people get scared with things that look or seem different than them. It feels hard."Prior to his closing comments in the epilogue, Arthur reflects on the past in Chapter 25 ("I am Carly"): "It's been fourteen years since Carly was diagnosed with autism and cognitive impairment. We were warned that she might never develop abilities beyond those of a child and would likely spend her life in a group home. Carly has defied most predictions and lived a life out loud, to paraphrase Émile Zola. These days, I think more about what's still to come than what might have been. I tiptoe into Carly's room and whisper in her ear as she sleeps, 'Everything will work out. Everything will be fine.' Then closing her door gently, I slip into bed next to Tammy and pray that I'm right."

I cried through the first half of the book. I am the mother of a child diagnosed with severe autism. Like this family we have been to geneticists, nutritionists, gastroenterologists, endocrineologists, otolaryngologists (ENT's). We have had metabolic panels, karyotypes, X-rays, MRI's. We have had other medical concerns with our child including surgery and various other diagnoses. We are NOT a "well to do" family. So to say that this book is not representative of the resources available. At least medically, is mildly dishonest. We do have state appointed therapists that come to the home (Ours is a special education teacher) as well as 2 ABA therapists, we go to a facility for Physical, occupational, and speech therapy. We don't have a nanny though (Goodness how I wish I did), and I work 50+ hours a week. We figure it out, any family can.To say this is not representative of a real families struggle is silly to me, as parents of children on the spectrum we all know the extremes that can be present within the disorder. Some children talk, some don't.Also, much of the second half of the book is written in carly's words. No, the book is not an account written entirely in her voice. but her parents kept transcripts and copies of their conversations and her father included those in much of the writing in the book.All in all, I think the purpose of this book, at least to me, was to offer hope. Hope that my seemingly out of control child will one day be able to tell me what she needs. Hope that one day, something will just click. I am not "wealthy", But much of the early struggle still is reminiscent of my daughters early life.Tammy, If you still come and read these reviews, Thank you. I am not Canadian, but I absolutely appreciate any advocate for children. Many of us are so wrapped up in what needs to be done for our own children, that we do not have the energy at the end of the day to do what you are doing for the children who are not ours.

I have read many books and watched several programs about autism. I gained knowledge from each, but this book goes deeper into the mind of the child and what they are thinking and feeling. Being trapped in a body that you cannot control and having no way to verbalize your feelings and thoughts is like being a child in solitary confinement for a crime you did not commit and do not understand.I had no idea that caregiving was a 24 hour/7 day job when the child's condition is severe. I was aware that bed wetting went on for years, but didn't know about lack of bowel control at night and the lack of sleep. At times it was difficult to read through the tears. My heart went out to the father, who is her main care giver and also works full-time usually with little sleep, and the mother who had to deal with her cancer and the care of Carly's twin sister and a brother, both healthy.The senses (smell,hearing,vision,touch and memory) are greatly intensified in people,and it can be over-whelming for them. The energy "builds" and it must be "discharged". The book describes these problems and how they deal with them.The ordeals the parents dealt with trying to obtain education, health care, and assistance with her care was over-whelming, but the mother did not give up. It was a constant battle. They were fortunate in finding some wonderful people, who were properly trained, to help. They also encountered some bad ones, some who abused Carly-who could not tell them what was happening.Carly suddenly surprises everyone when, in frustration, she starts using a computer. Many people with autism can be taught to speak verbally, Carly cannot. Typing on a computer is a slow and difficult process for Carly, but what a revelation! I highly recommend this book for everyone. It brings more knowledge and hopefully more understanding about people with mental and physical difficulties and how we can help them. G.ma Jane

This book is sensational in that it shows what is happening in the mind of an autistic person who is unable to speak. Carly and her father, Arthur show us what a struggle it is for Carly and we learn more about her every day. It seems that Carly's family is more than 'well off' and that gives them the opportunity to help Carly more than other families with low income.

I found this book a real eye open to the world of Autism, as l have a friend who's son has Autism he is 21 now, this book has made me really think what he must be feeling and understand more about his behaviour. Thank you for opening my eye.

I love what Carly has achieved and how hard she's worked to get where she is. I like that her family was supportive too but I bought this book thinking it would be a practical ​or at least an inspiring kind of story containing things that might work for other parents. But, unless you have a lot of money at your disposal, a nanny, private therapists, and around the clock people to do the work for you, this book leaves you feeling pretty helpless. I don't recommend it. Carly's FB page is far more inspiring than this book. It feels more like a cash cow than a genuine attempt to convey an inspiring story.

It was an alright book. However, I would have preferred it to have more of Carly herself - the title does state 'Carly's Voice'. A lot of her answers I've already read on her social network sites.

I'm a parent of a "globally delayed" daughter and there's much I can relate to in this book. Each globally delayed child has a unique combination of issues that need to be addressed and sometimes these can appear to be overwhelming. This book gives a pretty good picture of the journey of one family from the father's perspective.Most of the book is written by Arthur Fleischmann, Carly's father. Only the last but one chapter is actually written by Carly herself - although there are lots of speeches and comments by Carly peppered throughout the second half of this book. Arthur writes like a pro, making the book all the more poignant.Once started, this book is difficult to put down - with at least one shocking chapter that caught me by surprise. When I was half-finished reading this book I wanted to contact all my own daughter's professional helpers and ask them to read it too. But don't expect much response if you do! It will take time for the message to get passed down.So, what's the message? To paraphrase Carly: don't judge a book by it's cover. Just because a person looks and behaves wierd doesn't mean that they are. And every one of these people has an unspoken voice that needs to be heard by someone. Each autistic person has something to say, whether you can hear it or not.Carly has proved this message to the world and given us some unique insights into her own world. It's the duty of every parent, carer, professional and person-in-the-street to take away this message and ponder on it. She is not the first to do so, but Carly and Arthur are the first to document both sides of the story in this unique and emotive book.