For the purposes of this review, I will talk about the book only, and deal with the movie in a separate post.The book was written in collaboration with the movie, because the funding for the trip was made possible with the promise of a movie out of it, and the book deal accompanied it. I read the book first (A present from my boyfriend after a trip to our local Chapters) and saw the movie courtesy of Netflix Instant Watch.
Here's the good and bad about the beginning: I begged for my boyfriend to buy me this book because I saw a quote from Temple Grandin, arguably the most famous autistic person alive today, who endorsed it with hearty praise, citing it as a worthy book for those who wished to understand the connection between autistic humans and animals. Since I value Temple's opinion, I figured the book would be neurodiverse positive. However, in the back (I tend to read the backs of nonfiction books first, to see the sources used and acknowledgements) the very first "Recommended" place for more information was Autism Speaks. Normally I would reference exactly what they said, but I was so enraged by the endorsement of Autism Speaks that I tore out the page mentioning them and ate it, much to my boyfriend's shock and fright... *blush*
But other books on autism that I've cast my seal of approval upon had mentioned Autism Speaks in passing. It was certainly a major knockoff of points off their score for neurodiversity, but they made the cut, like Roy Richard Grinker's Unstrange Minds: Remapping the World of Autism.
So I persisted, and began reading. Immediately after Rowan was born and Rupert began describing him, I began to feel apprehensive. He said he felt "Grief, shame- this weird, irrational shame, as if I had somehow cursed this child by giving him my faulty genes, condemned him to a lifetime of living as an alien because of me." when it was discovered that his son was autistic.
I can understand how these feelings are relevant to a new parent who does not know much about autism. But the detailed description creeped me out- it fit the rhetoric of Autism Speaks perfectly: Autism steals, autism is shameful, autism is a curse, autism is no hope. Autistic genes are "faulty". It was not a good start. I suppose it is because I have yet to become a parent myself, but Isaacson's feelings were completely alien to me, and I could not at all sympathize to that sentiment upon his son's diagnosis.
But I do appreciate Isaacson's honesty. It continued when, upon bringing Rowan home from the hospital, he and his wife dreamed about their aspirations and hopes for the newborn: "Kristin... indulged her own fond images of someday engaging in long spiritual and philosophical discussions with her intelligent, spiritually and intellectually precocious son." or, "... already imagining how I'd teach him to ride, share adventures on horseback with him." perhaps I am reading into this incorrectly, but I gathered from the way that this memoir was set up was that this was foreshadowing to the fact that Rowan, as an autistic child, would NOT be fulfilling his parents' dreams and ambitions.
I'm going to deviate a little here and just mention that while it is understandable for parents to project dreams and ambitions of their own upon their children, the Isaacson's example serves as a perfect demonstration as to how flawed it really is, and only precipitates extreme disappointment. It's not just for autism either. Dream of your child becoming a star basketball player? What happens if an accident or disease physically disables them, or they're just not that interested, or their hand-eye coordination doesn't develop properly? Imagining troves of grandchildren and a beautiful white wedding for your daughter to a prince charming? What happens when your daughter comes out of the closet and/or gets her tubes tied? When we do these projections, we almost inevitably base it upon the assumption that our child will be able-bodied, neurotypical, straight, and cisgendered. They're also often based on the idea that the child will grow up sharing and adhering to our own values and morals. It starts from an early age, and continues until something "wrong" occurs. Rowan's autism is one example of this. But what a world it would be, if instead of considering their dreams crushed, parents everywhere took these revelations as a chance to open up new dreams and let their children take their own path in life. It would make a world of difference in the outlook not only of the parents, but of the child as well. Even children that are thought to be emotionally devoid or inattentive to the feelings of others, it can be sensed when one is considered a disappointment or a splotch on the perfect plans of our parents. The psychological effects of this realization are downright traumatizing.
When Rowan's autism begins to manifest itself, in tantrums, lack of pointing and eye contact, and delayed speech, Isaacson documents their attempts to understand why he is acting this way, seeking therapists, grandparents, and friends to offer advice or reassure them that it would pass in time. But as Rowan continues to show signs of autism, the damaging rhetoric begins to start up again, full throttle. "Our boy, our beautiful boy, was floating away from us, and there was nothing we could do." Chapter 2 opens with the words "We had a special needs kid. We had become one of those families."
Excuse me? One of those families?
It was then that I began to think, and was correct in thinking so, that this was all going to go downhill from here. It is one thing to document the struggles your family faces upon a new diagnosis of autism or any type of disability, and how it affects your life and the way people treat you. It is another thing to treat it like a scarlet letter affixed to your forehead which is cause for shame.
The rest of that opening entered much more familiar and sympathetic territory: A parent's search for the right information, and fighting back against the sea of red tape that has come to characterize seeking assistance from the government in America when it comes to therapy and medical assistance.
Even with two college-educated parents, one of whom held a PhD in Psychology, it was still a taxing, terrible uphill battle. ABA, the most commonly accepted treatment for autism, would cost them $50,000 a year. To give you an idea, in 2003, the median household income in Texas was $40,934 from 2001-2003. * Even two college-educated parents pulling a decent income would not be able to afford such an expense, and those that do are often reduced to extreme poverty to attempt to cope with the cost. It is something which perfectly displays the way our society has failed to assist families and individuals who need help managing with their disabilities.
During a talk about the costs of ABA, Isaacson and his wife talk about Rowan "recovering" from autism. At one point, Isaacson reminisces about two autistic boys that he knew while attending a Waldorf School in the UK, where he grew up:
One, Simon, used to regularly strangle the other kids and had to be pulled off of them by force now and then. He'd stand and flap and screech. He had once set fire to the school. The older one, an older boy called Robert, used to get his penis out in the middle of the crowded highways, masturbate wildly, and shout "Cock-a-doodle-do!" at the top of his voice.
Would that be Rowan?
As I read this, I felt nothing short of sorry for poor Rowan. Not because he may end up one day flapping and screeching or doing public exposure, but because his father had so little access to positive images of people with autism that he thought there could be no worse fate than being autistic and ending up like those two boys (Note, I don't believe in making autistic people act neurotypical in order to make neurotypicals uncomfortable. But I do believe that endangering other people or sexually harassing them is unacceptable)
As the book continued, I got treated to a detailed description of what they did to Rowan to treat his autism, and my most hated enemy, chelation, showed up. It was described in the book as rubbing on a sulphur-smelling gel onto Rowan with much resistance, and it was casually noted that chelation "took the good stuff out with the bad". I couldn't even imagine what terror and misery that being subject to chelation (Which can kill, by the way ) But it did not end there. Isaacson also fed Rowan Valaciclovir, more commonly known as Valtrax, a herpes medication, and a plethora of self-described sundry homeopathic supplements. To make Rowan agree to taking this foul concoction, they fed him extremely sugared chocolate milk, which of course worsened his hyperactivity and tantrums. Uh?
I'm already on record as to why I despise chelation, and homeopathy is downright quackery. I was trying really hard to forgive Rowan's parents for doing this, since they could not afford ABA and were unsure, but I do not see this as a parent. I see it as one of those people who, if I had been diagnosed at an early age, probably would have been subject to the chelation and pills. And the thought of choking down a variety of non-regulated supplements and herpes medication in an attempt to make me act more neurotypical gives me nightmares. What they did, even if it was out of a combination of misinformation and desperation, was unacceptable. The entire industry of autism cures is held responsible here, but Rowan is the one who suffers most.
I also took issue with Isaacson unquestioningly repeating claims about autism having an environmental cause, as well as looking to Simon Baron-Cohen, who is not particularly popular among the neurodiverse community, for answers to the "cause" of autism. He did not bother to dispute the claim that autism is linked to heavy metal poisoning or another environmental factor, not even a paragraph.
Considering how much press this book got, as a New York Times bestseller, this is extremely problematic. It aids the continuation of autism misinformation, and I believe something Isaacson could have done best to help not only his son, but all autistic people, was to include at least a paragraph admitted that the smelly solvents were not the solution, and that it is now common fact that chelation is dangerous and deadly.
I began to ease into the book more as it transitioned from bemoaning Rowan's autism to describing his great enjoyment of their backyard and the two zoos in Austin. This was something that brought me back to my own childhood, where I was comforted by outdoor adventures in Hawaii, Vancouver, and Montana with my parents. The quiet of the forests, the comforting rhythm of the ocean, and the smells, sounds, and sensations were the ultimate remedy to the over-stimulation of school and everyday life in a very busy town. One of my favourite things to do was to sit in the grass, look up, and admire the pleasing patterns of leaves and light breaking in through each other to form a type of mosaic, or else swing about on a rope swing. Being outdoors calmed me, and allowed me to collect my scattered thoughts.
These outdoor trips lead Rowan's parents, particularly his mother, to use his love of animals as a gateway to getting him to open up and excite him, to fantastic results. Coming home to see his room covered in animal posters, he was overjoyed, and was thought by parents to kick-start his imagination, using the posters as a springboard to tell stories about Rowan and his adventures with animals. I felt that this was the best part of the book so far, closer to what Roy Richard Grinker had done to help his autistic daughter flourish in Unstrange Minds, Remapping the World of Autism, through art and cello music.
It is during this episode that Rowan is discovered to have a rapport with a particular horse by the name of Betsy. Isaacson, having been raised around horses, believes that his son has a direct link to horses, and becomes determined to use Betsy to open him up and relax him in a way ABA failed to. This is also a time, during a Shaman's conference, where Rowan is exposed to Shamanistic medicine. Isaacson concludes that if Rowan is positively affected by both horses and Shamanism, the logical conclusion is to take him to Mongolia, where Shamanism and Horsemanship is combined in the local tradition. With the promise of a film deal (And this book) and after getting the consent of his wife, Isaacson, her, and Rowan set off via the UK to Mongolia.
In preparation for his journey, he meets with Temple Grandin, who offers an explanation for why the horse therapy has helped Rowan so much, and gives her his blessing for the journey to Mongolia. Just before they leave, Kristin Isaacson describes her son as "a born Buddhist", since he lives in the moment, doesn't take things personally, and doesn't suffer after the fact the way neurotypicals do. A rare deviation from the usual language of autism as a burden, turning to focus on Rowan's gifts and how his differing perspective can be a true blessing.
While on the way to Mongolia, Isaacson muses that he did not want to "cure" Rowan any longer:
Cured as in not being autistic anymore- for that was part of his essence. But I did want him healed. If there was anything Kristin and I wanted to say to the shamans, it was Please let him come back toilet-trained. Please let him no longer be held at the mercy of his tantrums, of his wild-storm nervous system. No longer hyperactive, with that incessant edge of anxiety that was like a fist around the heart, always ready to close suddenly and hard.
I'll be a bit honest here, deviate from the material, and just say this plain confused me. I have never really understood, as a skeptic with no real religious ties, the new-age obsession with healing. I've been offered multiple times by friends and acquaintances to be "healed" in some fashion or another. When I think of the word "healing", it seems to have the same properties as curing, only with a slightly less medical implication attached to it. I admit I can sympathize with the idea of putting Rowan in less pain, since I have many sensory issues that sometimes make it difficult to happily function in the everyday world. But I am still uncertain whether "healing" would be the word I would use, considering its baggage.
Part two of the review will detail the actual journey and aftermath in Mongolia.
* Source: http://www.census.gov/prod/2004pubs/p60-226.pdf Page 21, Money Income of Households by State Using 2- and 3-Year-Average Medians: 2001 to 2003