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Updated July 22, 2013.
A Child’s Journey Out of Autism, by Leeann Whiffen, is an impressive and literate memoir of Clay Whiffen’s first four years of life. It’s also the story of a mother whose absolute focus on her child with autism drove her (along with her husband) to spend her every moment and every penny, exhausting her health and doing damage to her marriage. By the time young Clay is ready to enter kindergarten, he has lost the diagnosis of autism (PDD-NOS) he had received at the age of two.
Was it all worth it? Most readers will agree with Whiffen that the answer is “yes” -– though this reviewer has many questions.
How Clay Developed Autism
Like many similar autism memoirs, this book begins with the birth of the “perfect child.” Leeann Whiffen, the daughter of a Utah rancher, is happily married to her husband, Sean. They have a wonderful older son, Drew, and their baby, Clay, is everything a baby should be. Soon, though, before the age of two, young Clay starts to show signs of imperfection.
Whiffen is certain she understands the source of her son’s problems. She carefully makes the reader aware of her pediatrician’s unwillingness to have her forgo vaccinations for her son. Whiffen explains to her doctor that Andrew Wakefield, a British researcher, has conducted a study that appears to link the MMR to autism, but the pediatrician pooh-poohs her concerns, saying that research shows no link between autism and vaccines.
Whiffen allows the vaccination, which results in high fever – after which her son is just fine.
Months later, he begins to develop signs of autism. Two years later, convinced that was the vaccine that caused her son’s autism, she writes an angry letter to her pediatrician, explaining how wrong he was in insisting that vaccines would not cause autism.
This book was published long after Wakefield’s research came under scrutiny and nearly all members of his research team recanted his findings -– yet it’s still Wakefield and his study that Whiffen cites as being a breakthrough in autism studies.
Starting Every Therapy at Any Price
Once her son seems to have serious issues, Whiffen -– like many autism moms -– goes into high gear. Determining that a full-scale ABA (Applied Behavior Analysis)program is appropriate, she and her husband decide not to pursue funding. Instead, they set up their own in-home program to the tune of $30,000 per year -– a cost they know will undermine their finances. Soon, they’ve maxed out their credit cards to pay their young therapists (whose training they underwrite).
More exploration leads Whiffen to start a GFCF (Gluten Free, Casein Free) diet, removing both wheat and dairy from her son's meals, which seems to have a positive impact. Based on what she feels is biomedical success, she takes Clay to Dr. Brian Jepson, a DAN (Defeat Autism Now) practitioner, who prescribes a collection of supplements and special enzymes which, he says, will take care of terrible damage he feels has been done to the boy’s gut. After a DAN conference, Whiffen comes back and asks Jepson to prescribe chelating drugs (intended to remove metals from the body), which he does.
And on it goes –- week after grueling week –- as Clay improves his behaviors and interactions. Therapists come and go all day, every day. Leeann Whiffen becomes a spokeswoman for the DAN treatment protocol and intensive ABA, and is appalled when she meets mothers who don’t follow the same direction.
Autism and Obsession
Throughout all of this, Whiffen herself starts to have health issues which she ignores… Dad Sean has business problems… the Whiffens as a couple begin to drift apart… but over time, Clay regains more and more functioning. At an autism conference in Salt Lake City, she looks around the room at the other moms and notes: "Most of us have put our lives on hold to help our kids. Many successful careers have ended, friends have been lost, bankruptcy and other financial woes crept in, hearts were broken, and dreams were shattered. But we know we have each other, the club, and we have hope. And our hope is made stronger when we hope together."
By the last third of the book, Clay is doing well. He movingly calls her by name for the first time, shows empathy, begins to build play skills. Toward the end of the book, a pediatrician declares Clay no longer autistic, and ready to start kindergarten as a typical student. Still, Whiffen continues Clay’s therapy, introducing yet another technique, RDI, to his regimen.
The end of the book, predictably, is inspirational. Clay, now in grade three, is indistinguishable from his typical peers. A third son, Judd, is perfectly healthy. The Whiffen’s financial and personal lives are strong.
The Bottom Line: A Great Read, But Readers Be Aware
This is a well-written and gripping book. But like many autism memoirs, its moral seems to be “nothing should stand in the way of providing your child with autism with absolutely every therapy that seems to you to have any hope whatsoever of having any positive impact whatsoever. If that means becoming obsessive, losing every penny, undermining your health, destroying your marriage, or putting your child with autism through hell -– so be it.”
Clay’s recovery is, of course, a wonderful thing. But what caused his autism, what facilitated his recovery, or which doctor “had it right” is not anywhere near as clear as the author suggests. Did the vaccines truly injure Clay? Was it ABA, GFCF, chelation, or just growing up that made all the difference?
I would suggest that parents new to autism read this book with some skepticism -– and remember that the answers are not clear-cut. Many go through all the anguish with none of the positive outcomes. Others do little, and yet their children thrive.
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