More Book Reviews

Following Ezra:
What One Father Learned About Gumby, Otters, Autism, and Love From His Extraordinary Son
By Tom Fields-Meyer
New American Library Publishers, 2011

From Anxiety to Meltdown:
How Individuals on the Autism Spectrum Deal with Anxiety, Experience Meltdowns, Manifest Tantrums, and How You Can Intervene Effectively
By Deborah Lipsky
Jessica Kingsley Publishers, 2011

Review by Linda M. Olsen, M. Ed.

The author, Deborah Lipsky, was diagnosed with Asperger’s in 2005 at the age of 44. She is married to a non-autistic man and has a Master’s degree in education and counseling.
Early on, the author writes that autism is more of a cultural difference, rather than a disorder. She continues, “it is part of our personality”. She strongly believes that the more the autistic and non-autistic populations understand each other’s differences, the smaller the gap will be between the two groups.

Almost everyone experiences anxiety to one degree or other at one time or another. However, the author writes that anxiety is a natural state for people with autism because it is part of their neuro-logical makeup.

Lipsky describes situations that foster anxiety in herself and others with autism. Firstly, “sensory overload” in all areas; taste, touch, sound and sight. She gives examples of things that have affected her over the years. Another situation that fosters anxiety is lack of predictability and scheduling. She believes “scripting” is the golden rule in autism. “We need every second of every minute of every hour scripted.” She is adamant when she writes that scripting helps to bring a sense of calm and safety to all persons with autism. A third anxiety producing issue is “sensory integration” or the ability to process auditory and visual input simultaneously. An example would be asking a person to look at you while you are talking to them. Fourthly, a more-developed peripheral vision instead of central vision. As a consequence, when someone gets real close to you to communicate you might think it is because of his/her lack of boundary issues. However, the author writes it is more likely this is because of a less-developed central vision rather than peripheral vision.

Miracles Are Made:
A Real-Life Guide to Autism

By Lynette Louise
Robert D. Reed Publishers, 2011

Review by Linda M. Olsen, M.Ed.

Miracles Are Made is packed with enthusiasm! The author, Lynette Louise, is multi-talented. She has a background in performance and creative arts and has been performing internationally in her one-
woman play about her search for ways to help her special needs children develop into independent
adults. The author also holds a Master’s Degree in Social and Behavioral Science, and degrees in Main Frame Computer Languages, as well as counseling and neurofeedback. Lynette Louis is nationally and internationally board-certified in neurofeedback. She is also an expert in autism and is certified as a child facilitator by the Autism Treatment Center of America. Most importantly, she is the mother of eight biological and adopted children -- four of whom have autism. At this time, three of the four live independently. Her twenty-nine year old son, Dar, still lives with her.

In her book, Lynette Louise shares stories from her personal and professional lives about the value of neurofeedback. She describes how neurofeedback cleared up her own twenty-year bout with diarrhea, improved her ability to focus, ended her issue of math avoidance, and lessened her need for caffeine. The author also describes her work with a variety of clients with Autism, Rett Syndrome, ADHD, and Parkinson’s and how they have improved and healed.

What is neurofeedback? Louise writes that neurofeedback is “a means of reading brain activity and then giving the brain information about how to balance that activity”. It is a technique that may calm and re-pattern brainwave activity to reshape a person’s behavior. When working with a client, sensors from a gaming computer and a monitoring computer are attached to the client’s scalp. The therapist uses the gaming computer to give rewards, such as a beep, or another sound, or changed images, such as actions of a character in the game, when desirable brainwave activity is detected on the monitoring computer. The goal is to change the client’s brainwave patterns into patterns which lead to more healthy and positive behaviors. Louise writes that neurofeedback makes permanent physiological changes to the brain.

As a single parent raising her children, the author describes how she used parent feedback such as words and rewards in combination with neurofeedback. She strongly believes this combination made her child’s healing quicker and more permanent.

Miracles Are Made includes informative chapters on the different varieties of autism spectrum disorders and commonly- used treatments. Reading Lynette Louise’s book introduced me to neurofeedback and its use as another therapy available for helping children and adults with autism and other challenges. Reading Miracles Are Made may convince you that neurofeedback is a therapy you may want to use with a friend, client, or loved one. For a general overview of neurofeedback, a good place to start may be the author’s website, www.lynettelouise.com, or on YouTube, “Lynette Louise works with Autism 3”.

Drawing a Blank: Improving Comprehension for Readers on the Autism Spectrum
By Emily Iland, M.A.
(with Forward by Brenda Smith Myles, PhD)
AAPC Publishing, 2011

There is a name for it! It is “hyperlexic”. This is when a person is a good decoder of the written word, but has poor comprehension skills. Many of our children on the autism spectrum have this disorder. The author has dedicated her book to parents and educators who want to help those with hyperlexia, and to her son, Tom. Tom is on the spectrum and has grown up with hyperlexia. He is now 26 years old and has earned his B.S in accounting, passed the CPA exam, and is working as an accountant. Ms. Illand’s purpose in writing the book is to have parents and educators better understand the needs of these readers and to find effective ways to help them.

I found the chapter, “Autism Spectrum Disorders and the Comprehension Connection” to be very interesting. Iland stresses the importance of building comprehension skills from the earliest stages of reading. She writes, “Addressing the comprehension issue is critical so that competent, capable people can fully realize their potential.” It is easy to see how comprehension difficulties will affect all subject areas of knowledge right through high school! She describes how the following can affect a child’s reading comprehension:

communication and language deficits which limit language processing, and receptive and expressive vocabulary;

(2) self-stimulatory behaviors which limit engaging behaviors that widen a person’s scope of interaction or activity knowledge;

(3) restricted and repetitive interests which limit the topics of conversation they engage in;

4.) lack of social play which limits imagination, perspective taking and vocabulary development;

(5) lack of joint attention which limits shared enjoyment and imitative play.

In another chapter Iland discusses how frequently comprehension issues are not identified because of skills such as good memory, good decoding, and fluency. There is no one perfect assessment to measure comprehension, but she offers suggestions for identification and evaluation. In addition, she includes suggestions for building vocabulary and the use of visual tools to foster comprehension, such as showing a film that presents concrete background to what they are about to read.

It is easy to surmise that parents and professionals can and should work together to identify and remediate “hyperlexic” deficits that impact our children’s reading and writing at the earliest stages. All involved will reap benefits.

I strongly recommend Drawing a Blank by Emily Iland to parents, teachers and other professionals who work with children and others with autism and “hyperlexia”. The book is based on the personal experiences and dedication of the author, and is filled with many helpful strategies and resources to improve reading comprehension for those on the autism spectrum.

The Autism Mom’s Survival Guide
(for dads, too!)
by Susan Senator
Trumpeter, Boston and London 2010

Susan Senator’s book is about creating a balanced and happy life while raising a child with autism. It is filled with helpful advice and strategies for moms (and dads) with children on the autism spectrum. The author writes from personal experience, being the mother of Nat, who was diagnosed with autism at the age of 3 and is now 21 years old. She also includes the personal stories and suggestions of numerous autism moms from across the United States who have shared their experiences with her.

Susan strongly believes that to have a balanced and happy life as an autism mom, one must obliterate negative perspectives or thoughts such as: What did I do to cause this? Now, my child will always be referred to as the “special ed. kid”! What’s going to happen to my love life? She writes that these kinds of negative thoughts rob one of happiness and energy. She adds that since her son Nat’s diagnosis with autism, “the most important thing I have realized in all this time is that autism is not tragic”.

Some of her book chapters include: Spending Time With Our Kids—Enjoying It; Me, Myself, and I –Why Self Care Is Essential; Improving our Love Lives-Yes, That’s Important, Too; and Letting Go-When Our Kids Leave Home.

My most favorite chapter in the book is Me, Myself and I; Why Self-Care is Essential. The author talks about how she does not just live with her bouts of depression, but has found ways to channel it into more positive energy. One of the major things she does is belly dance! She started by signing up for lessons sponsored by her local adult education department. This activity seems to be a daily part of her life. She writes and talks about it with much enthusiasm! While other members of the family excuse themselves when she starts dancing, Nat likes to watch! When I saw and heard her speak at a church in Wellesley in January, she talked about the various costumes she puts on when she does her belly dancing, and the important role it plays in keeping her positive and energetic.

After reading Susan Senator’s book, I believe you will walk away with many helpful suggestions for surviving as parents of a child with autism.. While obviously exhausted by her life as an autism mom, Susan Senator has always been a writer. Maintaining her web site and blog (http:// susansenator.com/blog/) and writing this book have undoubtedly added to her bank of energy and positive outlook.

All I Can Handle: I’m No Mother Teresa
By Kim Stagliano
Foreword by Jenny McCarthy Skyhorse Publishing, 2010

Kim Stagliano has a strong local connection. She grew up in Boston and went to Noble and Greenough School in Dedham, graduated from Boston College in 1985 with Doug Flutie, lived in a duplex in Newton when she was single, and met her husband to be in the Boston Marriott in Copley Place. She also is friends with Susan Senator, a Brookline author and mother of a son with autism. Kim credits Susan for encouraging her when she first started writing about her experience with autism.

The title of the book refers to the fact that she is the mother of three daughters born with autism -- Mia in 1994, Gianna in 1996, and Isabella in 2000. Mia and Gianna were formally diagnosed in 1999. The author describes her frustrations with doctors prior to the diagnoses and the challenges of having to be constantly vigilant with her children. She also describes the many frustrations and challenges she had to deal with because of her husband’s many job difficulties which caused the family to move frequently from state to state a number of times. Kim writes, “my mom and dad taught me how to be a parent. They’ve been married for over fifty years. My parents’ example of love and acceptance is why I’ve been able to cope with our challenges and remain married to Mark.”

The author believes that autism is treatable, the cause is environmental, and that children can recover. In 2007 she was asked to design and run a website devoted to the prevention of autism and she accepted. She is the managing editor of www.ageofautism.com, the nation’s first daily web newspaper about the autism epidemic. She writes for the Huffington Post, an internet newspaper, and is on the editorial staff of The Autism File Magazine, another internet newspaper.

If we think/know that raising one child with autism is a challenge/gift, can we imagine the challenge/gift of raising three children with autism? As I learned from reading her book, the author does so in an outspoken manner with strength, love, determination and a strong sense of humor.

The author ends her book by writing, “I will never stop fighting for research into autism’s
cause, for better treatments, and for therapy, and very soon I’ll be focusing on adult issues with the same intensity. I’m no Mother Teresa, but I am a Mother Warrior.”

Reviews by Linda M. Olsen, M.Ed.

The Best Kind of Different
By Shonda Schilling

Review by Linda Olsen M. Ed

Shonda Schilling is the wife of retired Red Sox pitcher, Curt Schilling, and the mother of Gehrig, Gabby, Grant and Garrison. She writes about Grant, who was diagnosed with Asperger’s in 2007 at the age of seven, and how his diagnosis affected her and the dynamics of her marriage. Shonda writes her personal story with emotion, detail and openness. When I saw and heard her speak in Medfield this past Spring, her sharing was the same.

By the time Grant was about three years old, Shonda started to become concerned about some of his behaviors. He didn’t like trying new things, he would wander off with no fear, he did not pick up on facial expressions, he would say “no” to everything. His general behavior was random and unpredictable. Shonda’s response to these behaviors was to scold, yell, and punish Grant even though deep down she felt there was a root cause for all of these behaviors. The positive side of his behavior was that he was affectionate and kind to others. Grant’s preschool teacher reported to Shonda about his sweetness and sensitivity toward accepting others," especially those with disabilities”. His first grade teacher informed Shonda about how Grant watched out for and became best friends with a classmate who had Down Syndrome. In addition to his sensitivity and caring ways, Grant seemed to love books and information.

In May of 2007 a couple of school administrators suggested Grant be taken to his doctor and be tested for ADHD because of his hyperactivity and lack of general focus in school.

As it turned out, he tested positive for ADHD. So now, the author had three children with ADHD and a husband with the same! However, the neurologist went on to tell Shonda that “Grant is on the autism spectrum”. “He is on the high-functioning end of this.” You might guess, Shonda immediately started to cry on hearing her son was autistic. So many questions ran through her mind—

How was she going to tell Grant? How was she going to tell Curt? How was Grant going to get along?

According to Shonda, Grant’s diagnosis of Asperger’s helped her to better understand his behaviors, however, she felt guilty she did not know this sooner so she could have treated him differently . She was feeling alone and like the only parent of a child with Asperger’s until she connected with the Asperger’s Association of New England and Youth Care, a special camp for children on the Spectrum run by Massachusetts General Hospital. A teacher from Youth Care, and teachers from Grant’s school were extremely helpful to Shonda in giving her strategies to use to help Grant at home. This was very empowering and helpful to her as well as to Grant.

In addition to better understanding his behaviors, Grant’s diagnosis precipitated some- thing else positive. Throughout the book, the author writes about the lack of communication between her husband, Curt, and herself. As a professional baseball player Curt was away from the family alot. He was on the road much of the time, and they moved to different cities when he changed teams. The lack of communication between the two of them, and Curt’s lack of understanding of his children because of his extended absences, led to extreme tension. Not long after Grant’s diagnosis, another son, Gehrig, was diagnosed with an eating disorder. Shonda and Curt were persuaded to go to couple’s therapy. This turned out to be very helpful in improving their communication. It changed the author’s opinion about therapy so much that she decided to begin individual therapy. She writes, “I started therapy in January of 2009 and I continue to this day”.

Seeking and receiving a diagnosis, putting guilt aside, sharing your story with others, and accepting help are strong messages that come across in Shonda Schilling’s book.

Shonda writes that with all of her struggles with Grant, he has been a gift in her life. She continues and writes that he is a source of unconditional love. Apparently, The Best Kind of Different.

The Horse Boy: A Father’s Quest to Heal His Son
Written By: Rupert Isaacson, 2009
 
Review by Linda M. Olsen, M.Ed.
 
Temple Grandin writes, “This is a story everyone needs to hear.” After reading the book myself, I agree with Temple. This is a gripping story about a fiercely determined father to heal his son of autism. After Rupert and Kristin married they moved to Austin, Texas. He was a travel writer and she a psychologist trained in child development. Rupert was born to South African parents and was brought up in London. In addition, he spent a lot of time on a farm outside of London training horses. It was there his love of riding and training horses began. Kristin grew up in California. In 2001 their son, Rowan, was born.

Up until about eighteen months Rowan’s development seemed to be typical. However, Kristin soon began to be concerned. Rowan was not pointing and his vocabulary was not increasing. Rowan was diagnosed with autism in 2004. He displayed lack of interest in playing with others, lacked eye contact and did not respond to his name, as well as other typical signs of being on the Autism Spectrum. Kristin and Rupert soon discovered Rowan’s interest and love of animals and nature. Kristin would read to Rowan and he would repeat the animal names. She displayed large animal posters (visuals) in his room and she would make up stories about each animal. This seemed to soothe Rowan and he would repeat her words. Rupert discovered Rowan loved going to the local zoos, and watching wild animal documentaries on television. Rupert was amazed at how calm Rowan was when they explored the woods behind their house. When Rupert took Rowan out to the woods his momentary inexplicable tantrums would stop. On one of their outings in the woods Rowan ran into their neighbor’s horse pasture. Rowan threw himself down on the ground right in front of the largest of the four horses. As a parent, Rupert was understandably frightened for his son’s safety. What happened next astonished him. The horse dipped it’s head and mouthed Rowan with it’s lips. This was a sign of equine submission, and in all of his time working with horses he had never seen this happen before! Another sign of Rowan’s affinity with nature and animals, and especially horses.

Soon after this occurrence, daily rides together on Betsy, the neighbor’s mare, began. Rowan loved sitting on the saddle with his Dad riding through the meadows. Simultaneously with the rides on Betsy, there was a change in Rowan’s communication. For the first time there were back and forth responses. Rupert would ask, “Shall we go back to the barn or to our house?” Rowan would respond, “Back to the barn!” Rupert would spell the names of animals they would see on their rides and then say the word. Rowan loved repeating the spelling and the name of the animal. These word games expanded as their riding continued. Rupert would sing questions or phrases along with the rhythm of Betsy’s hoof beats. Rupert became convinced that there was something about this rhythm that fostered Rowan’s vocabulary and communication.

While in New Jersey on family business I came across an article in the local newspaper with a headline that quickly caught my eye. It was, “Life’s Many Lessons, Learned in Rhyme and Song.” The article was written by a man who taught science to middle schoolers for forty one years. He wrote songs for his students to help them understand vocabulary words and various science topics. He further wrote that his students loved the songs and rhymes and they started writing some of their own. I thought, “what a coincidence”. Again, it was another example to me that what can be helpful for typical students is usually helpful to our kids with Autism. They just need more of the strategy.

As part of his work, Rupert had to accompany a delegation of Bushmen from the Kalahari Desert in Africa to the United Nations. As a journalist working with the Bushmen for many years, Rupert had seen many healings occur. So when the delegation of Bushmen attended a coinciding gathering of Shamans in California, Rupert invited Kristin and Rowan to join him. He thought the shamans might have some beneficial effects on Rowan. As it turned out, Rowan seemed to like the touching of the “healers” and he became less hyperactive and used more verbal communication as a result of his interactions with them.

It was this experience and Rowan’s connection to Betsy, the horse, that started Rupert wondering if there was a place in the world that combined horses and healing at the center of their culture. After more research, Mongolia seemed to be the answer. Rupert then connected with Tulga, who would be their tour planner and guide. This was the start of the family’s unforgettable adventure! Rupert’s greatest hopes were that his son would return home toilet trained, devoid of his inexplicable tantrums and ever constant anxiety.

The author writes with passion and detail about the trip. He describes the many miles, places and challenges they experienced as they traveled by horseback and van, their experiences with a variety of different shamans, the singing and rhyming they engaged in, the unusual food and drink they existed on, and the first friend Rowan made, Tomoo, Tulga’s six-year-old son. At the end of the book Rupert writes, “Rowan is still autistic -- his essence, his many talents, are tied up with it. He has been healed of the terrible dysfunctions that afflicted him—his physical and emotional incontinence, his neurological firestorms, his anxiety and hyperactivity. But he has not been cured. Nor would I want him to be.”

After reading The Horse Boy I am again reminded, as I was by John Robison who wrote Look Me in The Eye, that focusing on a person’s interests, skills and talents is the more fruitful path to take than to focus on their deficits.

*after returning from Mongolia Rupert started an equestrian program for kids on the Spectrum. The web sites of these centers are;

www.narha.org

www.horseboyfoundation.org

Look Me In The Eye
by John Elder Robison (New York: Crown Publishers, 2007)

Reviewed by Linda M. Olsen, MEd.

Now in his early 50’s, John Robison is a man who grew up with Asperger’s Syndrome. Look Me In The Eye is the result of John’s younger brother’s promptings for him to write a memoir about growing up with Asperger’s and not knowing that’s what he had.  It is a book suited for a wide audience; middle or high school students, and adults who are typical or on the Autism Spectrum.

John eloquently describes how growing up different from everyone else, but without a diagnosis of Asperger’s, was a very painful and lonely experience.  He writes about how his father and many others would constantly say to him, “look me in the eye”.  John explains how doing more than one thing at a time such as speaking and looking at the listener, or listening and looking at the speaker were difficult for him. This is typical for someone with Asperger’s. He writes, “to this day, when I speak I find visual input to be distracting”.  John also describes how he had a difficult time making friends with kids his own age because he did not know how to interact with them.  He was called names and always felt left out.  John constantly wondered what was wrong with him and wondered why he was having all of these difficulties.  In addition to having challenges with people outside of his family, John had a hard road with his parents. John’s father, a professor at UMass, was a serious alcoholic who would at times whip him and tell John he would amount to nothing.  John’s mother had a mental illness and she became worse.

Growing up, John had a variety of interests and obvious skills.  At an early age he discovered that he liked trucks, tractors, other types of machines, and engines.  He said it was because machines were not mean to him and he was in charge of them.  As he got older he started reading Hot Rod and Road and Track magazines.  He said he knew every car there was.  On one of his summer visits to his grandparents’ home in Georgia, his lifelong love affair with Porsches began.  His grandfather had just bought a used Porsche and John would lovingly wash and wax it.  John bought his own Porshe at 25 and has bought and rebuilt a good number of them since.  When he was in junior high school, he passed the advanced electronics test so he was allowed to enroll in Electronics 2 at his high school.  After this course, his mother introduced him to her friend’s husband who taught electrical engineering at UMass.  The people in the UMass Engineering Lab took John under their guidance and he would go there almost every day after school. About the same time he began hanging around the junior high’s audiovisual center.  The technicians there “adopted” him and John started fixing the school’s record players and tape decks. 

It was in the fifth grade that John became interested in music. His interest in music bloomed when he was visiting with his grandparents.  On a visit to a music store with his grandmother -- where his cousin was taking guitar lessons -- John picked up a bass and started playing it.  They left the store with the bass, an amplifier and music books.  He couldn’t play the bass very well and thought perhaps if he took the amplifier apart he could improve it and thereby improve the sound of his music. It was then that he realized his savant skill of visualizing the music sounds in his head and how they travel the circuits in the equipment. What followed was working for the band Fat, and his illustrious experience traveling and working with the famous band, Kiss.  He designed and rebuilt their sound equipment and visual effects. 

After leaving Kiss at the end of the 70’s he took a job as an engineer designing electronic games with the Milton Bradley Company.  In the late 80’s he decided to leave his corporate job after being told  various times that he was smart and creative, but not a team player.  Then with his life long love of cars and engines, he decided to start a business of restoring cars. He chose to repair and restore high end cars because he liked the way they were “put together”.  His business became so successful that his company, JE Robison, is still in operation. He attributes much of his success to being his own boss, his love of cars and engines, his “Aspergian understanding of machines”, and his technical skills.

Today, John lives in Amherst, Massachusetts with his second wife and son.  A high school dropout at 15, John has proven himself to be a successful businessman and writer.  For me, John’s story highlights several important points.  First, how very critical mentors and support people are for everyone, but especially for people with extra challenges in life.  John had a variety of adults who recognized his talents, skills and interests.  He did receive support and encouragement from his parents when they bought him books on electronics and the electronics kit when he was thirteen.  His mother was the one who got him connected to the Engineering Lab at UMass and the people there who allowed him many opportunities.  Additionally, his father’s parents were a great support to him as he spent many summers with them in Georgia.  John writes that he is very grateful to the technicians in the audiovisual center in his junior high school who recognized and supported his interests and skills. Second, it is much more helpful to a person with an affliction to have a diagnosis than to not have one.  John grew up not knowing why he had a difficult time interacting with kids his own age, feeling alone and with people calling him weird.  This was a painful experience for him.  It was not until he was forty years old that he got a diagnosis of Asperger’s.  It was from a therapist friend who suggested he read a particular book that described Asperger’s.  After reading the book, John realized this is why he was different. He felt relieved to know that he was normal for who he was. Third, we need to remember that people with Autism want and need friends even though they sometimes act as if they want to be alone.

 Finally, just as we should focus on the talents and skills of our typical children, we should focus on the talents and skills of our children on the Autism Spectrum. When I heard John speak at Wellesley College this past Spring, his response to my question, “What message should I take back to the student teachers I will be presenting to next week?”, was “tell them to focus on their student’s gifts”.

Look Me In The Eye by John E. Robison is a poignant story that made me feel sad, yet positive, hopeful, and more informed.  Perhaps you will come away with some of the same feelings when you read the book.

John Elder Robison’s website is:  www.johnrobison.com

Autism and Me Siblings Stories
by Ouisie Shapiro. Photography by Steven Vote.

I have to admit straight out of the gate, I do have a particular fondness to this book given that my daughter Faith and son Justin were featured siblings as well as a dear friend of mines children Christian and Mary-Gwen.
I met the books author Ouisie.  An amazing gifted and warm writer whose niece Arie, with Autism, and her brother Luke inspired her to write the book. She aspired to publish a book of siblings who would tell their unique stories of growing up with a special needs brother or sister.

The book features 14 siblings sharing their perspective experiences and personal narratives of Autism. The book shows the range of emotions honest and simple, about the characteristics their siblings with Autism possess, how they feel about those experiences and the way they shape their perspective. This book also has beautiful photos that capture fun and loving visual stories.

This book would be a wonderful addition to an elementary school classroom library, religious education classroom, or a gift to a young sibling growing up with Autism.  It is meant to teach others about the qualities of Autism in an honest and loving way. I think this book hits the mark across the board in that it will help others understand the symptoms of Autism while also telling stories of acceptance. 

I have a personal example of how this book personally touched a little boy.  My niece Jennifer called me one day and said “You wouldn’t believe what happened to me today”. I went to the library to find a book about Autism for Collin (her son).  He has high- functioning Autism and she wanted to begin to explain to him a little bit more about these traits. She came across Autism and Me Sibling Stories and signed it out of the library.  As she begins to read the book Collin asked her “Do you know anyone with Autism”? And she said “Yes” You have a cousin Justin with Autism.  She turned the page and just then she saw Justin and Faith’s story.  In sheer surprise she hesitated just a minute, and then said “And, here he is right there”. J   After she told me the story I said an “Autographed copy of the book is on its way”

The Morse Institute Library (in Natick) has a copy of the book. ISBN 978-0-8075-0487-1 

Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies
By Kenneth Bock, M.D., and Cameron Stauth

I’ll use my son Derek as the poster child for Dr. Bock’s title. The only thing Derek doesn’t have is ADHD, and there are times when he’s revved up that I wonder if he doesn’t have that as well. There’s a very good book called The Autoimmune Epidemic that postulates that twenty-five percent of the world’s population is at risk of developing some kind of an autoimmune condition, autism being listed as one of them. If you acquire one, you also risk acquiring another. Derek has certainly hit a jackpot in this case.

The book is divided up into individual sections covering each condition, and then outlines healing protocols, including detoxification, medication, and supplementation. There are also patient stories to illustrate how treatment works.

What originally got me into the DAN protocols for autism about a decade ago was that many of the ways to treat asthma overlapped with autism. One of the standard alternative ways to treat asthma is to pull out dairy and wheat, and that’s what kept Derek out of the hospital. It wasn’t easy to tell if Derek was having an asthma attack. By moderating his diet, his asthma abated to the point that he rarely needs medication. The way we found out he has asthma was an ambulance trip to Children’s Hospital. The chances serious consequences were high. Putting him on gf/cf diet has put him in a low risk category. If your child has been diagnosed with any autoimmune condition, including seasonal allergies, it has broader implications that should be investigated further.

Dr. Bock’s book is not about finding a quick fix. His standpoint is that autism is a complicated and multifaceted disorder. He discusses a number of options parents can employ and gives examples of testing procedures.

For parents who wish to investigate supplements, he gives guidelines. If someone is interested in chelation, he explains the proper procedures, and which procedures are safer.

Parents who need information on medication will find that as well. The book is 458 pages long, and there is a lot of information to digest.

Since vaccines have been in the news quite a bit lately, Dr. Bock’s amended vaccine schedule is helpful for parents who question the standard medical advice. Dr. Bock believes in vaccines, but he doesn’t approve of the hepatitis-B vaccine given on the first day of life, for instance, unless the mother has hepatitis-B. He also doesn’t believe a child should be given a vaccination when suffering from seasonal allergies, something that is rarely, if ever, discussed by any physician. If there are autoimmune issues in your family or your child has even mild allergies, this book can help you to make better health care decisions in general as you pursue treating autism.

Review By: Anke Kriske

"Rules" by Cynthia Lord

If you, like me, enjoy reading children's literature - this is a "must read." Lord is up there with major writers like Jerry Spinelli and Beverly Cleary as a creator of real, fresh, believable children who experience the world in all its colors. For families and teachers with autistic children in their lives, this novel is a terrific way to open the door to conversations.

Pros
A great book for siblings of children with autism
Great fun for parents as well
Compelling, believable characters
Warm and positive without being gooey or maudlin
Opens doors for conversation with kids and adults

Cons
This is a novel for kids, so adults might find it simplistic
The character with autism is not explored deeply
Description
A novel for children ages nine to 12
Disabled characters are full and real
Well-written and worthy of being on any reading list
A great tool for opening conversations
Provides insight into autism and cerebral palsy

Guide Review - Book Review: "Rules" by Cynthia Lord
I loved this book - read it through in one sitting, which is unusual for me. For one thing, it's one of the very few books with "autism" in the description that is a novel, and heck - novels are fun to read. For another thing, Cynthia Lord is a very talented children's fiction writer. What I really enjoyed, though, was seeing autism through the eyes of a sibling who is aware of all the ups, downs, frustrations and joys of autism in the family.

Two things surprised and interested me. First, I realized that the sibling relationship between Catherine and her autistic brother David is not that different from any sibling relationship. He drives her crazy and gets special treatment - but there's a unique bond between them that is unaffected by a diagnosis. This seemed very real to me, and echoed my experience with my own kids.

 Second, I was interested to see that Lord took the time-honored approach of making this book all about the kids - and NOT the adults. As a result, mom and dad are emotionally absent. This made me feel a bit sad, but to be honest, it seemed fairly realistic.

 I could easily see using this novel at school or at home as an entree to a discussion of relationships and disabilities (the story also includes a very three-dimensional character with severe cerebral palsy). A terrific addition to home and school libraries.

Reasonable People: A Memoir of Autism and Adoption
Written By: Ralph James Savarese

This is truly a heartwarming account of a couple who took in a profoundly autistic three year old whom they later adopted. DJ was not wanted by his biological father and stepmother because he didn't fit her notions of a proper child. His dysfunctional biological mother used him as a pawn. Any parent of a child with a disability will relate to the adoptive parents trying to do their best for DJ, struggling to find the best school placement, getting therapy, and helping a child who had been in foster care to adjust to a normal life. We definitely need more people like them. Emily Savarese is an inclusion expert who guided DJ's learning and helped him to make remarkable progress. To read about the frustrations of these well-educated, savvy, dedicated, and resourceful parents underscores just how society is failing autistic children. Mr. Savarese writes eloquently of every setback and every triumph.

Unfortunately, a major thrust of the book is about facilitated communication and how it revolutionized their son's life.

Autism is a complicated diagnosis under any circumstances. DJ not only suffered serious emotional trauma by being abandoned by his biological parents and being separated from his beloved biological sister, but he was also abused in foster care, and some of that abuse was sexual. I don't think anyone has the ability to sort out where trauma ended and autism began.

Facilitated communication comes with a sketchy history, which Mr. Savarese acknowledges. There's a strident note about the evils of trying to cure autism, and that if only we can present to autistics a way to communicate, they would be fine. Of course, FC is the means by which this communication takes place. Missing from the argument is why facilitators are needed. We have software that helps to predict words if there's a problem with word retrieval. We have augmentative technology that helps individuals with motor issues. I've seen clips of individuals whose motor skills make our children's flapping look mild, and yet one child had no problem managing a computer despite obvious physical problems. One young man who only has control of his thumb, can still play World of Warcraft. Undoubtedly, FC has helped some individuals with autism, but it has consistently failed to live up to the hype, and technological developments have made much of facilitated communication obsolete. Most of the autistic individuals I've met have no trouble navigating a computer on their own, given enough incentive. Keyboarding skills is taught in every school system with which I've had contact.

I'm sure facilitated communication has helped DJ reach his potential, but duplication of results is the hallmark of a successful therapy or tool, and so far convincing duplication for FC has not appeared. It's a great book about a good people, and that alone makes it a worthwhile to read. It's just not going to lead to any revolution in communication among our children.

Review written by: Anke Kriske

The  Science and Fiction of Autism By Laura Schreibman. Harvard University Press Cambridge, MA, London England 2005.

Sometime when you're feeling guilty about not trying enough therapies for your autistic child, read this book.  Laura Schreibman, a Distinguished Professor of Psychology and Director of the Autism Research Program at the University of California at San Diego, gives a good overview of the history of autism and the various treatment modalities that are out there now.  The book takes a very cautionary approach and repeatedly points out that although there are anecdotal success stories, the science for many therapies is weak or nonexistent.  The book ranges from discussing Lovaas and its various offshoots to the debunking of facilitated communication, which apparently still has its followers.  The book is a little too cautious in places--I'm still waiting for Bruno Bettelheim to be acknowledged publicly as a con man and not just misguided--but overall it tries for a calm and fair tone.

Some of her arguments against the biomedical approach to treating autism are simplistic, but her view of treatment is probably representative of most professionals who also don't have children with autism--skeptical of all but the most established and orthodox of treatments.  This book will show you how many a therapist or autism specialist thinks about the treatment options with which we struggle.  If you need to discuss a particular therapy with a medical provider or therapist, read the section on the therapy so that you know what the arguments against it are.  Understanding the perceived negatives will always help your argument.

Besides, it doesn't hurt to be a little skeptical yourself and keep a hand on your pocketbook.

Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy by David Kirby

"They hit themselves, bang their heads against furniture, throw themselves on the floor, pull their hair. They behave in strange ways. One little boy refused to walk and then started running away. Very often, depression follows these outbursts. The child remains completely quiet and silent and has a hostile look. Excitation and depression are often alternating. Intelligence may remain intact. But in serious cases, it appears diminished. Some children repeat the same words for hours. One child repeated constantly, 'I want some coffee,' with a monotonous voice." (page 63).

The symptoms sound familiar, but it isn't about autism, it's about Pink Disease, which took its name from the red rash that developed. Thousands of children in the 1930s were afflicted. The source of Pink Disease wasn't a virus, but inorganic mercury found in teething powders, as well as calamine lotion. Those old enough to remember that awful pink stuff they put on scrapes will remember Mercurochrome--and that name says it all. Reportedly 1 in 500 children who were exposed to products containing mercury developed this disease.

It's because of descriptions for Pink Disease that parents began to focus on thimerosal as a major culprit in the rise of autism. If the mercury in teething powder could damage children so severely, then children who are sensitive to mercury can be damaged as well through vaccination. Some of the parents with backgrounds in pharmacology, nursing, and medicine became alarmed when they added up the amount of mercury given to infants via vaccines. In Evidence of Harm David Kirby gracefully tells of their struggle to bring the debate about mercury into the open and to find effective treatments for autism, even if it ran counter to mainstream medical opinion.

There are familiar names, such as Dr. Andrew Wakefield, and Massachusetts' own Mark Blaxill. You'll also be introduced to Lyn Redwood, whose son not only received his allotted vaccinations, including those that contain mercury, but also was exposed to additional mercury prenatally when she received shots of Rho(D) to combat complications of RH incompatibility. Albert Enayati, another crusading parent, called an 800 number from Merck and asked about the nature of thimerosal and was told it was a harmless preservative. Like lemon juice. Yes, lemon juice.

Mr. Kirby, unlike most of the people involved in the autism controversies, doesn't have a child with autism. He became intrigued when a last minute provision was placed into the Homeland Security Act that would dismiss hundreds of lawsuits against Eli Lilly and other drug companies for allowing dangerous levels into the vaccines. It was tacked on in such a way that only a few members of Congress even knew it was there. Mr. Kirby smelled a rat. If mercury were indeed safe, as claimed, there would be no reason to go about such a clandestined method to protect the financial interests of drug manufacturers.

His book describes the efforts of parent groups to bring the environmental factors in autism to the public. We're all familiar with the struggles they faced with their children. What's disturbing is the way the parents were stonewalled, dismissed by experts as just lunatics, and out right lied to when they demanded answers from those in authority. Mr. Kirby does a great job explaining the science behind the vaccines, and the disturbing indifference of groups like the FDA and CDC to the rising autism rates and their unwillingness to look at environmental factors, and the politics that have made vaccines such an efficient and effective program.
Obviously we don't want a return to the times when entire families were wiped out by disease. But at the same time, vaccines can be made safer, but not cheaper, and therein lies one of the problems. Multi-use vials are cheaper than single-use vials. But what if the nurses forget to shake the vials carefully before each use? Then the vaccine left at the bottom of the vial can have many more toxic ingredients. Consider what's in vaccines: "formaldehyde, aluminum hydroxide, aluminum phosphate, ammonium sulfate, calf serum, fetal rhesus monkey lung cells, monkey kidney cells, chick embryo, fetal bovine serum, washed sheep red blood cells, casein from pig pancreas, phenoxyethanol (antifreeze), neomycin and streptomycin, and diploid cells originating from aborted human fetal tissue." (Page 84) That's quite a chemical brew, and aluminum, you'll recall, has been implicated in Alzheimer's, and is also a neurotoxin.

The argument is that the amounts of dangerous substances are very, very minute. What level of minute is actually safe? Assumptions are not facts. Some children are more susceptible to heavy metals than others, just as they were in Pink Disease, and some children also received additional dosages of mercury if their mothers had the flu shot, for instance. (Other sources of mercury include air pollution and teeth fillings.) This book will give you a greater understanding of the debates and problems behind the entire vaccine program. By reading Evidence of Harm, you'll see what the program needs to be modernized, held accountable for mistakes, and freed form egos and monied interests in order to truly serve the public.

If Evidence of Harm doesn't keep you up at night, wondering about the bureaucratic entanglements that make it harder to get help for autistic children and to hunt down the causes, I'll also recommend you read The Virus and Vaccine, which is about polio and some of the problems it may have created, including an increase in brain cancer, thanks to SV40 (for simian virus 40). The vaccine was cultured on monkey kidneys, and they weren't clean.

Animals in Translation:
Using the Mysteries of Autism to Decode Animal Behavior
by Temple Grandin and Catherine Johnson
Scribner, 2005

Temple Grandin's name has almost become synonymous with explaining autism, but this book is not about autism directly, but about animal behavior and how Dr. Grandin uses her different perspective on the world to solve problems handling animals, especially at slaughterhouses. The book is full anecdotes on animals misbehaving, such as dolphins deliberately killing porpoises, and animals with unusual talents, like Clever Hans, the horse who could count. Clever Hans did this by carefully observing humans, which enabled him to stamp his hoof to begin counting and told him when to stop at the correct point, even though the humans around him didn't consciously give him any signals. There are excellent sections on how a dog's instincts can backfire in a human setting, and how birds can be taught to spell, especially if there's a good incentive for them. For those interested in brain biology without the heavy-handed science, this book will be informative as well as pleasurable to read.

There are interesting comparison between animals and autism. Dr. Grandin feels that the difference between human and animal intelligence and typical human intelligence and those with autism is in the details. Humans have an outstanding ability to generalize. They get the big picture, but they can miss the details. Animals think in terms of details, which means they have extreme difficulty learning to generalize. They don't see the big picture. It's possible a similar situation exists with autism, that individuals are really only seeing the details, the beams and screws that hold a building together, but not the building itself. She presents a different way to look at the deficits of autism.

Autism is covered only peripherally, but you'll run into useful bits of information. For instance, there's a drug called naltrexone, which is an opioid antagonist. (For those who have been doing special diets with their children, you'll recall that intake of gluten and casein can result in children who are opiated.) This drug has been used to treat heroin and alcohol addictions. When used in animals, it makes them more social. This has also worked for some autistic children, and with low does of naltrexone they have become more social. (Go to pages 112-114 for the full explanation.) Dr. Grandin is also concerned about the amount of play children now do. Play apparently helps brain develop, and play consists of movement. If play is crucial for children's development, as it is for animals, then those hours of TV watching are getting in the way in more ways than giving us poorer coordination.

Although animals clearly don't think the way we do, it doesn't mean they lack intelligence. It's just a different order of intelligence, one we don't always appreciate. They can do things that we can't. Ultimately this book is a plea to be more aware of different forms of intelligence, and that includes respecting the intelligence of individuals with autism. Readers will acquire insight into how intelligence works, and by doing so, gain further understanding of autism.

Healthcare for Children on the Autism Spectrum
A Guide to Medical, Nutritional, and Behavioral Issues
by Fred R. Volkmar, M.D. and Lisa A. Wiesner, M.D.
2004 Woodbine House

This book is a team effort by a husband and wife and partially grew out of complaints from parents that they had trouble communicating with their children's physicians. Dr. Volkmar is a psychiatrist and director of autism research at the Yale University Child Study Center. Dr. Wiesner is a pediatrician in private practice in Connecticut. The authors tackle all the usual issues of childhood that you find in any healthcare publications--growth, nutrition, checkups--and put them in the context of the autistic child. The section on sleep, for instance, is very useful, giving both general advice and problems specific to autism, such as wandering about at night, that are not as simple to solve as they are for the typical child. They then go further and into more unusual topics--adolescence and sexuality, developmental deterioration, and medication--subjects which don't appear in the average healthcare book for children. There's a good glossary for parents who are still learning the language of autism, a list of helpful resources, and a very helpful section on dealing with insurance companies. I like questions and answers that are at end of each chapter, like the one about an eight year old who loves to open and close doors and the recommendation that she become the official door opener and closer to channel her desire into a more socially acceptable direction. Medical issues and the small challenges of parenting an autistic child are both covered with compassion and understanding. This book will also be helpful to your pediatrician if he or she doesn't understand some of the issues in autism, and the footnotes and references have professionals in mind as well as parents. As our children age, they will be encountering health professionals who are seeing autism for the first time. Take the book with you as Dr. Volkmar suggested in an interview, and these experiences will be easier for both parties.

More Than Words
61608982 Fern Sussman
Hanen Early Language Program, 2001

The subtitle of this book says it all: Helping Parents Promote Communication and Social Skills in Children with Autism Spectrum Disorder. If you need help finding ways to introduce new words and social skills to your child, More Than Words will give you a tremendous number of ideas and suggestions illustrated with colorful sketches to cover almost any situation, from breakfast to learning about pronouns, and from playing on swings to learning about pretending. Some of the suggestions are to incorporate singing into daily routines, and here's something unusual for therapy, making sure that the children have fun while they're learning. Their catch phrase is "say less and stress, go slow and show." Parents are guaranteed to find tips that can be incorporated in the vast number of teaching opportunities that arise in every day. Most of the material is geared to young children, but older children can also benefit from the suggestions. Highly recommended.

Healthcare for Children on the Autism Spectrum: A Guide to Medical, Nutritional, and Behavioral Issues by Fred R. Volkmar, M.D. and Lisa A. Wiesner, M.D.
Have you ever had the feeling that your pediatrician doesn't really understand autism? Dr. Volkmar, the director of the Developmental Disabilities Clinic and Research Program at the Yale University Child Study Center, and his wife, Dr. Wiesner, a pediatrician in private practice, have heard this complaint from parents. Unfortunately, this becomes more of an issue as children become older and deal with healthcare professionals with no expertise in autism. This book is designed so that parents can, if necessary, take it with them on doctor-visits to help educate professionals.. The endnotes will be helpful for any pediatricians or parents who wish to do further research on autism on their own.
This book has a good overview of autism and related conditions and then has chapters on handling issues that are usually routine matters for parents of typical children, but are much more complicated for our children, such as growth and nutritional issues , sleep problems, and visits to the emergency room. There is solid information on seizure disorders, medications, and dental care as well as a subject still rarely discussed, adolescence and sexuality. All parents can appreciate the section dealing with insurance. This is an excellent book to have on hand to answer medical questions and to help parents deal more effectively with healthcare providers.

Exiting Nirvana by Clara Claiborne Park
Foreword by Oliver Sacks
Little, Brown and Company
Boston, New York, London 2001

Every parent who has a child with autism wonders what the future will be like--and there are still very few books about adults.When Jessica Park was born in 1958, most of the therapies we take for granted were in the future, and she didn't even have the right to a public school education.Clara Claiborne Park described her youngest child's life in The Siege, a groundbreaking book first published in 1967 and still a good source of practical information.Exiting Nirvana is about Jessy's life as she enters adulthood and reaches middle age.

Thanks to Mrs. Park's dogged determination, Jessy acquired language and social skills and learned to cope with obsessions and sensory issues.Parents will recognize their children in Jessy's behaviors:numbers were a special delight, school bells would make Jessy scream while the dishwasher sounded like music,and sentences were sprinkled with meaningless hellos. Behavior modification has helped Jessy a great deal.This was done by first using a point system and written contracts that capitalized on Jessy's love of numbers to modifying behavior to earn praise.The book is full of approaches that parents can use with their own children, even if those children are rapidly turning into adults.

For over twenty years, she's been employed in the Williams College mailroom and has earned enough money to help renovate her parents' kitchen.She keeps house and manages her parents' medication.While unusual interests and joys remain, and Jessy can't live a fully independent life, she has mastered most of the mundane activities we all need to function on a day to day basis.And then there are surprises--like Jessy's incredible art--exceptionally vivid and dramatic renderings of bridges, buildings, and even dials in Andy Warhol's pop style but with more substance and creativity. (To see her art, please go to www.jessicapark.com.)

Jessy has come far from a child who needed nothing and wanted no one.She's still struggling to acquire skills and develop more empathy, but learning has never stopped.She continues to develop as an individual, and in that there's a strong message of hope for all our children, that they will also develop and grow and demonstrate unexpected gifts.

Maverick Mind: A Mother's Story of Solving the Mystery of Her Unreachable, Unteachable, Silent Son.
by Cheri L. Florance, Ph.D.

Looking at that long subtitle, readers are prepared for a recovery on the scale of Helen Keller, whose name is frequently mentioned. (By the way, forget the movies about Helen Keller. They're basically fiction. She had the instinct to communicate but was trapped by being blind and deaf. Despite her handicaps, in reality she was much more attuned socially than many an autistic child.) This is one of those books that brings about mixed emotions. On one hand, this book demonstrates that children who are thought to be unable to communicate and understand can change dramatically. On the other hand, her child's experience has led Dr. Florance to create what I presume to be a moneymaking extension to her career without scientifically demonstrating in her book that her methods apply to any autistic child other than her son. This is a serious flaw in the book. I would like to see scientific validation for Dr. Florance's methods in the book and on her website. This is a case where validation shouldn't be based on purely anecdotal evidence since it's possible to design the appropriate tests.

Whitney, Dr. Florance's third child, had problems from birth and was impressively unresponsive. Like many autistic children, he had strong visual skills and could master puzzles with ease. He was prone to escaping; doing so once when locked in with his siblings in a hotel room but was able to navigate through the hotel. He didn't feel pain when a car door slammed on his arm. In many ways, he was classically autistic. Since this is a success story, the good news is that he did remarkably well.

The bad news is that the average parent doesn't have the resources to work with a child this intensively, and the usual approaches to treating autism--diet, sensory integration, ABA--are annoyingly missing in this book. A parent who doesn't know about these treatments wouldn't learn anything about them. Discussion about autism is kept conveniently in the background--Dr. Florance presenting herself as courageously navigating over new ground. The account is extremely personal.

That said, the book is very useful for its discussion about I.Q. tests--that bane of our existence at so many occasions. Dr. Florance is against the test results being lumped together because the aggregate number won't show a child's true intelligence. For parents told their child is mentally retarded as well as autistic, this section may prove helpful at your next IEP meeting as it shows the flaws in testing. The descriptions of how children fail to modulate sensory input can also be helpful to understand one of the puzzling aspects of autism, where sometimes a child acts deaf and at other times demonstrates hypersensitivity to sound. These two sections make the book very useful.

Dr. Florance has created a program to help extreme visual learners, such as Whitney, and use that strength to develop communication skills. A member of the Autism Alliance has been doing the program, and she says that it's helping her child. Too much communication in a classroom--and at home-- is auditory, and if a child's auditory system is not working appropriately, it shouldn't come as a surprise that they're not learning. Visual learning is a subject well worth checking into. For children who haven't been completely successful learning spoken language, visual learning can give them an opportunity to excel. Dr. Florance's website can be accessed at www.cheriflorance.com.