I Am in Here: The Journey of a Child with Autism Who Cannot Speak but Finds Her Voice

by Elizabeth M. Bonker and Virginia G. Breen (Revell 2011)

Virginia Breen narrates the story of her 13-year-old daughter Elizabeth, interspersing her narrative with Elizabeth’s poetry (written between the ages of eight and thirteen) and commentary.  Autism prevents Elizabeth from speaking, but after she learned to use a device called a letterboard from Soma Mukhopadhyay (another “autism mom” who created this simple device to help her son Tito communicate), and then  began to use a typewriter, Elizabeth was able to write poems and messages to communicate her thoughts. One of her first comments after learning to use the letterboard was, “I finally got to talk.”

Elizabeth’s poems are not complicated, but they are heartfelt. I loved her comments on the poems. A couple of examples: “I am frustrated because I can’t speak. Why me? I don’t get it. Why do people have disabilities?” (p. 60) and “I sometimes get frustrated and act out before I realize what I have done. I hope to be able to better deal with my emotions so people won’t be scared to be my friend or schoolmate.” (p. 72) and “I am not always able to show people how I am feeling. Sometimes I am not feeling well inside, or I have a hard time focusing. Sounds or smells that bother me do not seem to be noticed at all by others. I struggle to fit in, and succeed most days, but like everyone else, I have a bad day once in a while.” (p. 77) and “When learning something new, I have a hard time. I need time to figure it out in my own way.” (p. 85) These comments give NT (neurotypical) readers some insight into Elizabeth’s experience.

Both Breen and Elizabeth believe deeply in God and His power to heal Elizabeth. I am not a believer, but I admire their faith and hope for both their sakes that Elizabeth will be healed some day.

Elizabeth’s compassion for other people whom she sees as more challenged than she is is inspiring.

As I was reading this book, I often wiped tears from my eyes.

NLD From the Inside Out: Talking to Parents, Teachers, and Teens About Growing Up with Nonverbal Learning Disabilities

by Michael Brian Murphy with Gail R. Shapiro.  Booklocker.com, Inc 2008.

Michael Murphy started writing this book as a psychology paper when he was in college, and his mother collaborated with him to make it into a full-length book.  It’s a nice addition to my NLD library.  Murphy is writing for a mixed audience of teens/young adults with NLD and the adults that live and work with them.  For me, the best chapter was “Your NLD Brain”, which explains the anatomy and functions of the brain very clearly and taught me some things I did not know, like “The putamen is responsible for procedural memory, such as knowing how to tie shoes….”  Who knew?

The book features extensive quotations from other young adults with NLD whom Murphy interviewed.

Quirky Kids

by Perri Klass, M.D., and Eileen Costello, M.D. Ballantine, 2003.

I’d like to recommend a book I just discovered: Quirky Kids: Understanding and Helping Your Child Who Doesn’t Fit in–When to Worry and When Not to Worry, by Perri Klass and Eileen Costello.  It focuses on Autism Spectrum disorders including HFA and Aspergers, nonverbal learning disability, ADHD, sensory integration dysfunction and more. Klass and Costello are Boston-area pediatricians and moms.  The book was published back in 2003 by Ballantine, and oh how I wish I had read it back then! It’s really so comprehensive and practical.  I found the section in Chapter 2 on Diagnoses and Labels to be particularly helpful.  It explains clearly how different specialists give different names to (parts of) the same thing.  Another very helpful chapter is Chapter 10, “Mind-Altering Substances: Medications and the Quirky Child”, which lists meds available in 2003 and before, what they may be used for and what to watch out for.  I wish I had a 2010 edition of that chapter!  Finally, the last chapter gave me hope by reminding me that it is a lot easier to be quirky when you grow up: “Despite a great deal of romantic twaddle about the freedom and innocence of childhood, the truth is that many children’s lives are strictly regulated, and no major deviations from the norm are tolerated. A child can’t wake up one morning and decide, That’s it. I’m through forever with math…with riding those damn buses…with pretending I like the great outdoors.  But adults can easily make such arrangements for themselves.”  The book also includes excellent resources and references for each chapter.

Here is the link to the book’s page on amazon.com; unfortunately, there does not seem to be a second edition.

The Body Has a Mind of Its Own: How Body Maps in Your Brain Help You Do (Almost) Everything Better

by Sandra Blakeslee and Matthew Blakeslee (Random House 2007)

This is a fascinating book.  The authors, a mother and son science-writing team, endeavor (mostly successfully) to make some of the latest developments in neuroscience accessible to the lay reader.  It is now well established that everything our bodies do, both inside (circulatory systems, &c) and outside (movement, language, &c) corresponds to “maps” in the various parts of our brains.  Poke the map in the right place, and something happens; apply the proper stimulus (movement, touch, graphic image…) and neurons in the corresponding map can be observed to fire.

In the first chapter, the concepts of maps, body schema (your perception of your body), body image (your belief of how your body looks) and body mandala (the network of body maps in the brain) are introduced.  The subsequent chapters each take up different aspects and research areas of these, such as how your body image may not correspond to reality (why you still feel fat when you’ve lost excess weight, for example), how mentally rehearsing movements and skills can be almost as effective as actually practicing them (think of athletes’ or musicians’ visualizations), and how what you wear or carry or wield literally becomes an extension of your body, as far as your brain is concerned.

Chapter 9, “Mirror, Mirror: or, Why Yawning is Contagious” was especially interesting to me.  It deals with mirror neurons, special brain cells that represent not only one’s own actions but also those of others.  These mirror neurons allow us to understand the body language of other people and thus to anticipate what they might do, because their actions are mirrored in templates in our own brains. A dysfunction in these cells is suspected in autism and may also be involved in the inability of people with nonverbal learning disorders to read body language.

Favorite quote:  “When you watch dance, your brain dances.” (p. 170)

The webpage for this book is here. It includes excerpts, links to interviews, reviews, and more.

From Emotions to Advocacy: The Special Education Survival Guide

by Pam Wright and Pete Wright.  Harbor House Law Press, 2006 (2nd edition).

Pam and Pete Wright are the founders of Wrightslaw, a website devoted to special education, advocacy, and the relevant laws.  They also have a free online newsletter and have written several books to guide parents of children with special needs through the legal intricacies of IDEA and NCLB, including Wrightslaw: Special Education Law, which I own and also recommend, From Emotions to Advocacy, and others, as well as DVDs and other websites.  I wonder when the Wrights have time to do anything else; maybe they don’t.

For me, the most important benefit from reading Special Education Law was actually reading the law for the first time.  The Wrights stress the importance of reading the statutes and regulations for oneself.  This was how I first realized that schools are obligated by law to prepare children with disabilities for independent living (insofar as possible) and employment — not only to educate them in the traditional sense of the three Rs.  I had been led to believe that skills not directly applicable to education (math, reading, writing) were not the responsibility of the school to enhance.  Wrong!

Legal language is difficult to read, but the Wrights explain and clarify, giving plenty of examples.  They use the same strategy in From Emotions to Advocacy (in fact there is quite a bit of overlap between the two books).  In this book, I learned how to collect all the reports, IEPs, medical records etc. that had been languishing in 30 different folders and organize them into a chronological master file.  (They recommend using a large 3-hole binder to keep the documents–I already have three!)  I am now in the process of creating the index for this file.  It has been very educational for me to go back and look at these documents again, and the Wrights point out that in order to be an effective advocate, a parent must become very familiar with the contents of the file, because no one else is ever going to read through all of it!  There are useful chapters in both books about keeping a written record of all communication with the school and how to write effective letters that will serve as solid evidence if there is a dispute or due process hearing.  They assume that school systems may need legal coercion to provide FAPE (a Free Appropriate Public Education, guaranteed by IDEA), so the books are geared toward preparing a strong case.  I hope I will not need to use my Master File for this purpose, but if I ever do, the Wrights’ books and websites will certainly provide excellent guidance in how to proceed!

Nonverbal Learning Disabilities at School

Educating Students with NLD, Asperger Syndrome, and Related Conditions, by Pamela Tanguay. London and new York: Jessica Kingsley Publishers, 2002.

How I wish I had read this book years ago, when my daughter was struggling in elementary and middle school and I couldn’t figure out how to help her! How I wish her teachers had read this book! I would like to give a copy to each of the schools she has attended (seven now), to help them to recognize NLD in other children before it is too late.

Pamela Tanguay, of NLD on the Web, has written a very practical book for educators (but good for parents also). Included in the eleven chapters are an entire chapter on “Arithmetic and Math”, one on “Reading, Spelling, and Vocabulary,” one on “Penmanship, Writing, and Composition” and one on “Organization, Study Skills, and Homework.” These give very specific advice on how to teach, and how not to teach, children with NLD of different ages. There are also more general chapters on the school environment, teaching strategies, social and emotional functioning of the child with NLD, and spatial and psychomotor challenges.

The book is probably way too idealistic. The kinds of accommodations Tanguay recommends are so far-reaching that I doubt they could ever all be put into place. It would require teachers to teach whole classes as if all the children had NLD! It would also take far more time than teachers have. Tanguay warns that every accommodation and strategy that is not used places a road block in front of the NLD student, setting her up to fail. (I wonder how actual NLD students who manage to graduate from high school and college and even go to graduate school succeed, because they surely did not have all of Tanguay’s recommended accommodations!)

Still, some of her advice would not be too difficult to implement, and certainly every teacher who has a child with NLD should read this book. If it does nothing else, it may convince the teacher that the child is not being lazy or noncompliant when she cannot do what she is told. Tanguay reminds us that since these children are fluent talkers with large, often precocious vocabularies, people often assume that they are smart in other ways as well, or could be if they just tried hard enough or paid attention. Tanguay explains, for example, that people with NLD cannot attend to two modalities at once, so if the teacher demonstrates something as she explains it, the whole lesson is wasted on the NLD child. The teacher must first explain verbally, and only then demonstrate. You can see how this would be awkward and time-consuming to implement in a real classroom–especially if only one child requires it. Yet it explains much about the struggles of these children.

Smiling at Shadows: A Mother’s Journey Raising an Autistic Child

by Junee Waites & Helen Swinbourne (Ulysses Press 2003)

This is a very moving account of the life of a severely autistic child and his loving parents, who like many parents of children with disabilities, discovered strengths in themselves they probably never knew they had.  Australians Junee and Rod Waites tried to understand their son Dane’s world as much as possible, finding that his autism brought unusual gifts along with its well-known deficits.  Their struggle to educate Dane and make him as independent as possible is inspiring.  Dane functions amazingly well in a world that must have been as strange to him as another planet.

Born on a Blue Day: A Memoir (Inside the Extraordinary Mind of an Autistic Savant)

by Daniel Tammet (2006; Landmark Audiobooks 2007, narrated by Simon Vance)

This book is one of the most interesting books I’ve read recently.  Daniel Tammet is a young British man with autism and savant syndrome; he is extraordinarily gifted in the areas of mathematics and languages.  Unlike many (or most?) people with savant syndrome, he is verbally articulate and is able to describe, for example, how he “sees” numbers as mental landscapes having shape, color, and size; how he goes about learning (or creating) a new language (he learned enough Icelandic in a week to go on national television and be interviewed in the language!); and his experiences as a volunteer English teacher in Lithuania–his first time living away from home!  What a gutsy guy.  He’s a real inspiration.

Here is one of several videos on YouTube about Daniel Tammet:

Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior

by Temple Grandin and Catherine Johnson (narrated by Shelly Frasier)

I first read this marvelous book in 2006 and just listened to the audiobook.  It is so  fascinating.  Temple Grandin, author of Emergence: Labeled Autistic; Thinking in Pictures: And Other Reports from My Life with Autism; and The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism here considers the way animals perceive the world and the way people with autism perceive the world, and finds them to be surprisingly similar.  She postulates that autistic people may occupy a middle ground between human perception and animal perception.

There are numerous fascinating examples about cattle and dogs as well as other animals.  Grandin matter-of-factly shows how autistic people, including herself, react in many ways in the same way animals do to stimuli in the environment.  For example, whereas people screen out irrelevant details from what they see, perceiving only the whole, animals (and autistic people) are unable to screen out anything and do not perceive “wholes”; in other words, we see the forest, and they see the trees.  More accurately, we see the tree, and they see each leaf and bit of bark.

Dog owners in particular will gain much knowledge about their pets from this book.  Grandin knows a lot about dogs and shares her knowledge here.  Reading it will improve the ability of dog owners to understand and communicate with their dogs.

Asperger Syndrome

edited by Ami Klin, Fred R. Volkmar, and Sara S. Sparrow; Guilford, 2000

This is a collection of heavily documented academic essays on Asperger Syndrome. They are very detailed and not easy to read. As I read them, I will add a brief summary of each chapter.

Part I, Behavioral Aspects

1. Volkmar and Klin, “Diagnostic Issues in Asperger Syndrome”

Hans Asperger described four boys with social and motor deficits in 1944. He called what these boys had autistic psychopathy. A year earlier, Leo Kanner had described a syndrome he called early infantile autism. Asperger’s work was not translated into English until 1981 (by Lorna Wing, who also modified Asperger’s original concept). Whether or not AS and autism constitute different forms of the same thing is still unclear. AS also shares characteristics with other conditions: schizoid personality in childhood, nonverbal learning disability, developmental learning disability of the right hemisphere, and semantic-pragmatic disorder. It is extremely difficult to compare the different conditions because diagnostic methods vary and different studies use different diagnostic criteria.

2. Ozonoff and Griffith, “Neuropsychological Function and the External Validity of Asperger Syndrome”

External validity means that a syndrome is truly unique. This article discusses the fact that AS does not yet really have external validity; it is still linked in the minds of many (professionals as well as the general public) with high-functioning autism (HFA). The authors examined studies focusing on motor skills, visual-spatial abilities, executive functions, and theory of mind to see if any of these neuropsychological domains could clearly distinguish between AS and HFA. Again, it was difficult to compare studies because the subjects in the studies were not always clearly one thing or the other. The problem is that psychologists are trying to see how Aspies are different from autistic people, but the same diagnostic criteria are not used for all the studies; so it is impossible to determine if the groups really differ or not. The authors conclude that the only area which offers any support to the validity of AS as separate from HFA is Theory of Mind (Aspies seem to have it, autistic people seem to lack it), but they admit the difficulty of coming to any real conclusions because very few comparable studies have been carried out, and there has been a lot of sloppy research.