Travis_J_Smith’s #CBR5 Review #175: Nobody Nowhere: The Remarkable Autobiography of an Autistic Girl by Donna Williams

Nobody-Nowhere1This book re-unleashed my inner cynic, the part of me that can only see the worst in humankind. I’d like to think we’ve evolved, so to speak, since Williams’ formative years, but I don’t know that we’ve had. We’ve gotten better at (formally) labeling the ones kids and similarly ignorant adults will undoubtedly call “retarded,” “crazy,” etc. and I think that’s about it. Perhaps I’m biased by my own upbringing, but it’s not often that someone’s parents truly puts in the effort to get to know their child. So often there’s a disconnect between child and parent, and not just because of the age or generation gap; they’re simply out of touch with one another and the parents, whose job it should be to bridge the gap, will rarely do anything to change that.

Nowadays, Williams’ teachers might’ve recognized the characteristics of autism, but that would’ve just given her parents something to pin all her problems on, and even more of a reason to ship her away somewhere else with people actually qualified to do something to help her. I think of them like the parents in Matilda, times a thousand. They never understood Donna and it’s because they never made an effort. She didn’t fit into their family picture, so they either pushed her out of it or tried to beat her into line. There are more kids these sorts of situations than I, or anyone, would care to admit.

On the flipside, though, that she managed not just to survive it all, but to thrive, and actually because of that same mistreatment, is an inspiration. I don’t know that I could’ve made it through what she did, and yet Donna Williams, who it seems actually has more difficulty coping than you or I, generally speaking, was able to. Making herself and her feelings understood was another seemingly insurmountable challenge of hers, yet in writing this book she succeeded at that as well, doing a better job of it than many, including myself.

If you want, then, to have the best and worst qualities of the human race reaffirmed, read Nobody Nowhere. It’ll make you simultaneously a cynic and a romantic.

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ElCicco #CBR5 Review #39: Mo’ Meta Blues: The World According to Questlove by Ahmir “Questlove” Thompson and Ben Greenman

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I’m going to confess up front that I’m not a fan of rap and know little to nothing of hip hop, musical genres that came to the fore in the 1990s and are the milieu of Questlove and his band The Roots. But I know who Questlove is, having seen him on Chappelle Show (which I never missed) and The Jimmy Fallon Show. He has always looked like a pretty cool dude and when I read reviews of his book, he sounded really interesting, too. I imagine for music aficionados, this book will be an absolute trove of great artists and their work, perhaps a trip down memory lane or an introduction to great stuff you missed. As someone who isn’t tapped into all that (I had to look up a lot of Quest’s references on YouTube), it was still a really interesting memoir. Questlove and his friend/Roots manager Rich Nichols (who gets to have his say in footnotes) are intellectuals. Quest is an introspective person, interested in collaboration, supporting new artists while giving props to past artists on whose creativity he wishes to build.

Questlove is a Philly native and comes from a musical family. Much of his personal history is woven throughout the book, so while there is some chronological family history and education history (all very interesting and told with love, respect and honesty), some other information comes out in the course of telling other stories. The memoir’s set-up is cool. The telling is very self-aware (I’m telling my story but letting my best friend respond to it in case my view isn’t completely accurate or so we can all see another perspective on the same events). The associate writer, Ben Greenman, also gets to have his voice heard through the emails he sent to his boss about the project. Given that Questlove is a fan of collaboration, having his memoir so obviously a collaboration among talented and creative minds is both fitting and informative. Questlove tries to live what he believes.

Questlove’s life has been pretty interesting. His father and mother were both musicians, and Quest and his sister went on tour with the band and eventually became part of it. He attended arts and/or religious based schools, ultimately attending high school at CAPA, where he met his friend Tariq (aka Black Thought) and started what would become The Roots. I certainly learned a lot about the music industry, particularly the history of the 1990s rap/hip hop scene and its rivalries. I enjoyed reading about Quest’s musical interests, which are eclectic. He is a huge fan of the Beach Boys and tells some funny stories about having to hide certain albums from his parents. (They especially disapproved of Prince.) I am a sucker for the stories about meeting his idols, such as KISS when he was 7 years old and Prince when he was an adult. And he also gives his side of the Michele Bachmann/”Lyin’ Ass Bitch” controversy from Fallon’s show.

One of the revelations that really knocked me for a loop comes early in the memoir and has not been discussed in the reviews I’ve seen. Quest reveals that when he was little, his parents took him in for some sort of behavioral evaluation. He says, “I wasn’t a normal kid…. The concern was about my personality, which seemed eccentric. I don’t think ‘autistic’ was a common term back then, but I later found out that they had taken me to a doctor to see if something was really wrong.” Quest was obsessed with circles and spinning objects (like turntables) and developed a fascination/obsession with music (and Rolling Stone album ratings) that has served him well in his professional life. I don’t know if he really has autism, but the way he and his family managed his “eccentric” behavior is pretty cool and a good example to parents like me who have kids on the spectrum.

It would be a mistake to pass over Mo’ Meta Blues because you aren’t interested in Questlove’s particular brand of music. This is a fine memoir in its own right. I found it inspirational and informative. This would be a great read for mature teens interested in music and the industry, too. It’ll show how you succeed while keeping hold of your soul.

Emalynn’s #CBR5 Review #05: Loud Hands: autistic people speaking by the Autistic Self Advocacy Network

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From the moment that I heard about this book on Social Skills for Autonomous People, I knew that I had to track down a copy. Available from Amazon and at nine libraries throughout the country now (two when I was looking!), I highly recommend this book, especially if you have any interest in disabilities or autistic self-advocacy.

Loud Hands is a collection of essays, speeches, and blog posts from a number of Autistic adults, exploring their fight to be seen as different, not less. Some, such as “Do Not Mourn for Us” explain the frustration that autistics feel when family or friends express a wish that they would be “cured.” Autism, the author explaisn, is a part of who he is and wishing for a cure is tantamount to wishing “that one day we will cease to be, and strangers you can love will move in behind our faces.” This is a sentiment that I had never considered, and I found it very powerful- because I know that autism doesn’t just affect the way that someone speaks, or moves, or communicates, it also affects the way that they think, making it an important part of who they are. Rather than focusing on “curing” autism, and making autistics just like everyone else, the focus should be on improving quality of life- not forcing children to have “quiet hands” if flapping helps them to stay calm, not insisting on verbal speech if someone is more comfortable typing or signing. Other essays were heartbreaking, particularly “Quiet Hands” by Julia Bascom (which you can read here) and “Killing Words” by Zoe Gross (here), which explored the treatment that autistic children have faced.

Though as a whole the book was inconsistent and often in need of editing, it was incredibly moving and powerful. I learned so much about what it is like to live with autism, and I certainly re-evaluated many of my opinions and beliefs. I really cannot recommend this book enough if you are interested in autism, or have an autistic family member or friend.

nelsonmilum’s #CBR5 Review #03: Love Anthony, by Lisa Genova

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The decision to read this book came from my grandmother posting on Facebook. And while I didn’t stop what I was doing, I did immediately add it to my list to read this year. Love Anthony is a very interesting read, especially if you aren’t used to contemporary fiction. It follows the story of two women, their lives, and the affect a certain boy with autism has on them.

<– Read More at my blog –>

ElCicco #CBR5 Review #1: Far From the Tree: Parents, Children and Identity by Andrew Solomon

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My study is of families who accept their children, and how that relates to those children’s self-acceptance…. In turn, it looks at how the acceptance of larger society affects both these children and their families.

In this ambitious work, writer Andrew Solomon examines “horizontal identities,” i.e., identities that a person finds with some group outside one’s family (vertical identity). For the purposes of this study, those identities are with marginalized groups whom society might like to cure, correct or otherwise eliminate. Over many years and through interviews with hundreds of families, researchers and other professionals, Solomon identified several marginalized identity groups and raises provocative questions as to whether they should be recognized, accepted, and valued for who they are as opposed to working toward their correction or extinction.

Each chapter deals with one identity group, and the titles are deaf, dwarfs, Down syndrome, autism, schizophrenia, disability, prodigies, rape, crime, and transgender. The book begins and ends with chapters on Solomon himself, as a son struggling with dyslexia and homosexuality, and as a father in a non-traditional family. Solomon provides an impressive, well researched, balanced and compassionate exposition on each topic. He does his background research into the science of his topics and lays it out clearly for the reader, but this is no dry psychology text. What illuminates Solomon’s research are the real people whom Solomon interviewed over the course of many years, watching family dynamics unfold and the real relationships of parents with their “different” children progress.

For each identity group, there is contention within and from without as to whether the difference should be eliminated or accepted and accommodated. Is it an appropriate goal to make everyone the same? The Deaf, for example, have their own culture and, as Solomon points out, it is stronger now than ever, but due to technological advances such as cochlear implants, that culture is threatened as hearing parents decide to provide implants instead of embracing their children’s deafness. Does it make sense to try to stop this from happening? Due to prenatal testing, parents can select out Down syndrome and many choose to abort a fetus at risk for Down syndrome. Is this desirable, or would it be better to welcome the difference and create a better environment for the success of those with Down syndrome? Conversely, if parents are able to select out “defects” in their children, would it not be understandable that deaf parents or parents who are dwarfs would want their children to be like them? Society cringes at the notion of purposely choosing deafness or dwarfism for children as if it were cruel and sick, but what makes us think that the lives of these people are of lesser value than any other life?

Much of this book revolves around the families telling their stories, and that is what makes it so very compelling to read. Even though they are dealing with problems that they didn’t foresee and that they cannot eliminate, most present positive attitudes and resilience. Many become advocates for their identity group. Solomon does provide examples of families for whom the problems are too much, who are struggling and don’t necessarily see the life before them as a “trip to Holland” (a reference to a famous essay by Emily Perl Kingsley regarding the birth of her son who has Down syndrome). But he does so with compassion and little in the way of judgement. The two chapters that I was most interested it were “crime” (because I had read that he interviewed Dylan Klebold’s parents) and “schizophrenia” (because I know little about it and it seems so scary). I received an education on schizophrenia. While it is a horrible burden for those who have it and for their families, there are a lot of misconceptions about it in society at large. We should have compassion instead of fear for those who have it. The chapter on crime and the interview with the Klebolds (only a few pages in a very long chapter) reveals how kind they are and how devastated they were by their son’s actions at Columbine. There was more to that story than most people know, and I feel bad for ever blaming parents like the Klebolds for the crimes of their children.

As the parent of two children with autism spectrum disorders, I must comment on the autism chapter. We in the autism community are a divided and contentious bunch, but for the most part, I think Solomon managed to present the issues we face and our differences accurately. He starts this chapter with a heartbreaking story of a family he has known for many years now. The daughter, at the age of ten, was institutionalized because she was becoming dangerous to her family and her parents were at a loss as to how to help her, given the severity of her behaviors. Throughout the chapter, Solomon presents several stories of families struggling to help their children who are not independent and display troubling behaviors, and he recognizes how difficult the struggles are for the child and the family, especially when there is little to nothing in the way of community supports for those families.  Towards the end of the chapter, Solomon highlights the tragedy of parents murdering their autistic children and essentially getting away with it. I was stunned at the evidence he provided regarding the number of murders that have happened and the lenient sentences that parents received. The life of a child with autism is somehow less of a life to the judges who sentence. It seems “understandable” that a parent would get frustrated and kill the child, and that is sickening.

My one criticism of this chapter is about this statement of Solomon’s: “The increased rate of diagnosis is crucial to the claim that there is an epidemic — critical in lobbying for resources for research. But the higher functioning people whose inclusion has brought up the numbers are often the ones who advocate against some of that research.” That second sentence needs some evidence to back it up. I am unaware of any research that shows the higher rates of autism being related more to “higher functioning” people getting diagnosed. “Higher” versus “lower” functioning is a minefield in and of itself and is not an official part of any diagnostic criteria for autism.

Having made that criticism, I should note that others will have many more complaints about this chapter. Those in the autism community who are sure that vaccines cause autism and who are anti-Neurodiversity will hate it. Solomon wrote about Neurodiversity for New York magazine several years ago and is sympathetic to the movement. Many adults with autism have a chance to speak up for themselves in this chapter and many do so with intelligence and conviction. They like who they are and do not want to be “cured.” They want to be accepted and valued as equal members of the community, which I think parents of children with autism the world over wish for as well.The ND alienate some in the autism community, however, by taking an “anti-cure” stance (which seems to stand against scientific advancement) and criticizing interventions such as Applied Behavioral Analysis, which is the go-to intervention for autism and is only now being recognized by insurance companies as a coverable expense. Parents are made to feel that the interventions they choose are self serving for the parent and harmful to their children. Solomon quotes a parent who says,

The fact that my children have an abnormality of development does not meant that I do not love my children for who they are. As with any other condition that would threaten their future and happiness, I do as much as I can to help them be functional and as normal as possible. And no, “normal” to me does not mean “a cookie-cutter robot-child trained to do my will.” It means: “able, like most people without autism, to lead an independent, purpose-filled life — able to speak, able to communicate, able to form and keep relationships.

Far From the Tree is an ambitious, unique piece of research and reflection on identity. It should be required reading for policy makers and would be a great choice for a community book read. Each chapter could provide hours of discussion.