Our story is different in that we did not get the autism diagnosis at the beginning of our journey, as most families do. Roo's autism was atypical, and he was evaluated after he had begun to respond to treatment. He was eventually diagnosed with PDD-NOS, which is essentially atypical autism. We also described a number of unusual characteristics of our son at that time of his initial evaluation, characteristics we would later learn (thanks to a friend at a birthday party and Google) are indicative of Hyperlexia. I cried when I joined an online group for families of children with Hyperlexia, because I could not believe that there were other children like my son. Children who would spend their time at the park forming letters out of sticks, who would read signs out of the car window, and who loved their alphabet magnet sets as dear friends.
This discovery didn't occur until the fall of 2007, one-and-a-half years after his evaluation, and while it was a relief to have a word to describe our son, it gave us no direction as to how to help him. He clearly had a physiological, medical problem rather than just a "differently-wired brain". After putting him on the gluten-free/casein-free diet, we discovered that he had extreme food sensitivities. He had very disordered sleep, often being awake for hours in the middle of the night. He was very sensitive to certain sounds, he was a very picky eater, he would wake up screaming at night- clearly in pain- but unable to communicate his needs to us. His bowel movements were horrible events, slimy and quite possibly appropriate for use in biological warfare. Obviously something in his gut was seriously wrong.
We have received very little guidance from professionals in regards to our son. We have been essentially making this up as we go along, getting most of our inspiration and ideas from other families on the internet who are on the same quest. The world we all inhabit together in cyberspace is a very strange one and begs for a metaphor. Karyn Seroussi, in her book Unraveling the Mystery of Autism and PDD, uses the poem of the Jabberwocky. Sometimes it feels more like a trip down the rabbit hole into wonderland, where reality breaks down and the unbelievable is common place. At other times I think of the Odyssey, when it seems that fate is against us, when we meet up with the short-sighted Cyclops of conventional medicine, and hear the alluring Siren call of the neurodiversity movement. At other times it feels like a demented episode of Blue's Clues in which we find little blue paw prints on lab tests showing high levels of toxic metals, food allergies, and metabolic functioning. We have journeyed up the river as in Apocalypse Now, going ever further into the darkness of political corruption, greed, deception, and what lies at the end truly is horrific. It can even be like an episode of the X-Files, and I do believe the truth is out there. Something is going on with our children, and the truth is out there.
As our son began to recover from his autism (he is now recovered), there finally was time to begin writing down his story, although I would prefer to forget it all. The early years of a child's life are supposed to be wonderful and cherished memories, but for thousands of families like ours, they have been a hellish nightmare. I can't believe my son is almost 6 (at the time of this revision, he is 11). He is almost 6 and I am just getting to know him. I know he had a beautiful personality as a baby but I hardly remember it, before it was blotted out by this disorder. Many people claim that ASDs (Autism Spectrum Disorders) are part of who a person is and should be respected. My son has a complex disorder that is neurological, immunological, and digestive in nature, and as we are treating these physical problems his personality is shining through.
Our son's road to recovery has been anything but straightforward- it has wound around on itself, full of twists and turns and sudden changes of direction, and so this blog will probably also jump around and seem all out of order. Welcome to our world :)