More Book Reviews By Anke Kriske

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.