This blog was originally set up to chronicle the adventures of our family as we desperately try to bring our son back from an Autism Spectrum Disorder. There are thousands of other blogs out there tirelessly bringing you a similar message- treatment is possible and recovery is real. So, we'll add our voice into the mix. Our story is a little different than many, and maybe hearing it will help someone. Or, at least, maybe it'll be interesting to someone :)
Our story is different because our son does not have an autism diagnosis officially. He was evaluated at 3 years old, after being on the gluten-free casein-free diet for about 6 months. That diet turned him around, so it was no surprise that when evaluated he did not meet the criteria for autism. Years later, when I asked his biomed doctor what she thought, she told us that "he would be diagnosed with PDD-NOS if we wanted that sort of diagnosis". She knew that at that point we did not need or want a diagnosis to help our son, but I do have to say that getting it (ay least sort of) was actually a relief and quite validating.
We also described a number of unusual characteristics of our son at the time of his initial evaluation at the age of 3, characteristics we would later learn (thanks to a friend at a birthday party and Google) are indicative of Hyperlexia. I cried when I joined a listserv for families with hyperlexic children, 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 stop and read every sign they passed, 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 physical problem rather than just a differently-wired brain. After going on the GF/CF 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. 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.
Our son is now close to recovery and there is finally 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. 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 my world :)
