Perhaps the single most insidious and ultimately destructive promise during those early years after my daughter was diagnosed was the idea of “recovery.” There were a multitude of different diets, the gluten-free/casein free diet and the GAPS diet, that some said had “recovered” their child, making them indistinguishable from their peers. There were the bio-med treatments ranging from daily B-12 shots, hyperbaric chambers, ointments applied topically, vitamin supplements, chelation, homeopathic and naturopathic remedies to stem cell treatments. There were the therapies that made up the center piece of books claiming full recovery and the many doctors and specialists who supported them.
In the beginning we were terrified. I still remember that feeling. The nights of not being able to sleep, staring at the ceiling and worrying only to finally slip into a semi-conscious state of fitful sleep. The next morning, there were often those first 60 seconds upon waking when I’d forget the worries that had kept me up. Then reality would come rushing back and it was like being thrown into a bottomless pit of worry, stress and terror. The fear was relentless and was fueled by just about everyone we came into contact with. Our child was far too young to have predictions made about her future, and yet people made them and all of them except those stories of “recovery” threw me into further fear.
People compared her neurology to cancer or Parkinson’s and likened the various therapies and treatments to chemo; a necessary horror that no one enjoyed, but that must be done. And I believed them. I had to save my child. I would do anything to save my child. Various things were deemed more acceptable than others, but dig deep enough and you can find any number of people, doctors and specialists who swear by whatever it is they believe will transform a child who does not speak, who seems so frustrated and unhappy into a speaking child who is no longer in pain. Had this not been the case, had they not claimed complete “recovery” we would not have subjected our child to any of it, but instead, we tried all of them.
So much of what we were told seemed to coincide with what we were seeing. My daughter could not use spoken language to speak. She seemed to be in almost constant internal discomfort. She cried, gut wrenching screams of pain, regularly. Her sleep was erratic, her behavior confounding, her distress with things I couldn’t understand seemed constant, her inability to communicate what was going on made it all the more confusing. So many of the professionals we took our daughter to seemed convinced that their treatment or remedy or whatever it was would be the thing that changed everything. I desperately wanted her to not be in pain. I desperately wanted her to be able to communicate. I wanted nothing more than to ease her frustration. For years I never thought – perhaps everyone is thinking about all of this wrong.
So on one hand we were introduced to autism as a horrible thing, but that there were people and things that could “treat” it and if we were lucky she could “recover” and on the other hand we were told no one knew what caused it and there was no cure. It is this, seemingly two opposing thoughts, that many parents are introduced to. It is no wonder so many choose to believe the former and not the later, even when, in doing so, we head into a labyrinth from which there is no end. The third idea, that this is a different type of neurology and to compare Autistic neurology with non autistic neurology is detrimental to all involved and to suggest that one neurology can be trained to become a different one is not only an unachievable goal, but an unworthy one, was not introduced to us until much later.
There is nothing quite so awful as to see your child through the lens of those who are seeing nothing but deficiencies, challenges and problems. Assumptions are made about intelligence based on tests used for a different neurology. I often wonder what we would have done had we been introduced to Autistic people who didn’t use spoken language, but who typed to communicate. Would we have been so frantic? I don’t know. What I do know is that rethinking everything we once believed, refusing to submit to the idea that autism is the source of all that is wrong, seeing how non autistic neurology has its own set of deficits and challenges, and finding a way for our daughter to communicate has changed everything. If we spent even a small percentage of the money currently being spent on autism and autism research, on finding better ways to support our non-speaking kids so that they too could communicate using stencil boards, letter boards and typing keyboards, at least some of the panic many parents feel would subside.
2005
Emma's Hope Book 