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Autism Book Review: Unraveling the Mystery of Autism

Autism Book Review: Unraveling the Mystery of Autism

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Updated March 02, 2009

Autism Book Review: Unraveling the Mystery of Autism

Unraveling the Mystery of Autism

Courtesy of Broadway Books
Karen Seroussi's "Unraveling the Mystery of Autism" was written in 2002. For some, it's a sort of manifesto - pointing the way to a "cure." For others, it's the story of a passion that grows into an obsession.

A Warrior Mom Is Born

Unraveling the Mystery of Autism and Pervasic Developmental Disorder by Karyn Seroussi is an important book. It's well written. It's often read. It's introduced by autism pioneer Bernard Rimland, whose work on the one hand overturned the pernicious "Refrigerator Mother" theory of autism and, on the other hand,introduced the world to some of the most controversial therapies available.

With all that can be said in its favor, I frankly found the book to be disturbing and at times even frightening.

In many ways, this is a typical "autism mom" memoir. It tells the story of a normal child who regresses into autism, which, as in many such memoirs, seems to include a range of symptoms rarely or only occasionally associated with autism(ear infections, asthmatic breathing, GI issues, etc.). Following young Miles' diagnosis, his mother, an ordinary mom, becomes what today is often referred to as a "warrior mother." Nothing will stand in the way of curing her child, and, along the way, battling other mothers who disagree with her perspective.

"Slaying the Beast" of Autism

Seroussi was one of the earlier autism moms, and her memoir includes some of the most significant moments in recent autism history. She was among the early adopters of the GFCF (gluten free, casein free) diet and a variety of other biomedical autism treatments.

The book is quite technical, and includes a good deal of complex information about diet, supplements, blood tests, and research. It's also dramatic, loaded with words like "obsessed," "spectacular," and "mysterious." It's easy to get carried away with the author's enthusiasm for her subject and passion for her cause.

Somewhere around the middle of the book, though, I began dog-earing pages that struck me as … just a bit scary. For example, Karen Seroussi's "secret parent vow":

    Would I do anything for my child? What would I risk to save a stranger's child? Will I fight this thing, beat it down until it exists no more to torture innocent families? This goal will become part of my life, my daily purpose, my reason for living. I have no choice. I will be driven in a way that I never dreamed I could, and I will not rest until the beast has been slain.
This is real, almost pathological obsession -- the kind of obsession that tears apart marriages, undermines the lives of siblings, ruins finances, and often causes the child with autism to suffer far more than is necessary. It's also the kind of obsession that causes parents new to autism to become overwhelmed, terrified, and willing to follow any advice -- no matter what the source -- in the hopes of a cure.

Passion? Or Obsession?

Later in the book, Seroussi practically attacks a mother in the grocery store who has chosen not to put her child on a GFCF diet. She accuses the mother of being "in denial," and then describes herself as "trembling with anger" of the mother's lack of commitment to her child. The reader, of course, is expected to resonate with Seroussi's response -- not with the shock of a parent suddenly assaulted by a dietary vigilante.

In another hard-to-read chapter, Seroussi decides to have her son, Miles, undergo invasive GI procedures. At this point in the book Miles has been on the GFCF diet for years, has developed many high level skills, and his GI symptoms include only "thin, loose stools" and a limited selection of foods. Nevertheless, Seroussi chooses these procedures on the basis of findings from Dr. Andrew Wakefield's lab in the UK. Wakefield was later discredited and is now under investigation.

Seroussi describes Miles drinking barium, fasting for a day, and then being so weak he has to be carried into the hospital for his hours-long colonoscopy and exam. "My heart ached for this little child," she says, just before she adds "He did not flinch when the IV needle was inserted." After all this, and a range of complex treatments for yeast, bacteria, and so forth, Miles' stools becmme darker and firmer, and he eats a few more foods. Even his mother couldn't say which of his many treatments had made the difference.

The Bottom Line: Why Obsession Is Not a Parenting Style

Miles Seroussi, at age four, was already verbal and engaged. Despite his many strengths, though, his mothers focus was squarely on the "beast" of autism. Her obsession with this "beast" led her to extraordinary extremes. For some parents, Seroussi must certainly be an inspiration. The ultimate "warrior mom," willing to do anything for her child.

To me, Seroussi is a dangerous precedent. A parent so obsessed with her child's disorder that she's willing to risk everything and anything for even the slightest improvement. By following her example, other parents may choose to take that "secret vow" -- to turn their lives into a crusade, and their children into the object of an obsession.

It's almost impossible to see such an approach to parenthood as a positive direction - for the parent, their spouse, or most particularly, their child.

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