A Puzzling Juxtaposition
ideas at the same time.
F. Scott Fitzgerald
Okay. I’ll admit it. I’ve only just started the journey of dealing with this thing called Autism, and already I’ve had enough to last me a lifetime.
Enough of people wanting to cure my son. Enough of people expecting me to want cure my son. Enough of people taking it personally when they discover that, no, contrary to their personal quest, I do not find anything wrong with the way my son is wired, but I do find something wrong with the attitude of society which does not place any value in what adult autistics have to say, in spite of the lucidity and logic of their arguments. “But they’re autistic…they don’t understand they’re suffering.” Now, that’s a logical argument!
Enough of people giving me parenting advice or acting as if my son is contagious when he melts down in the middle of a public place because of sensory overload and proceeds to let me know at a physical force level and volume to rival Hurricane Katrina that we need to find a quiet space where he can decompress…NOW! “One good spanking would fix that brat.” “All he needs is sleep.” “How can you let him behave like that in public?” Or, because he’s kept on a child’s harness for his own protection since he runs everywhere… “how can you be that cruel?”
Enough of financial and social supports that are federally mandated to be in place, and then are pablum-ized and stretched so thin as to literally be non-existent. And please, before you say it…don’t assume that the school programs offered are any better simply because they are provided by the school districts. They are not. In fact, I’m still trying to figure out why no one else sees it as a blatant conflict of interest that the gatekeepers to the programs that have been federally mandated by the IDEA are the same ones that hold the fiscal responsibility for providing those programs.
And - to be brutally honest with myself – enough of Mini-me’s meltdowns occurring when the one person he trusts in the world to truly understand him on all levels and respond – me, his mother – sometimes just doesn’t “get” it.
But, I digress.
When I first began this journey called parenting, I was gifted with a singular piece of advice that still resonates with me today. An old country doctor told me “read everything you can get your hands on about child development and parenting, then put it all away and trust your instincts. You’ve got a broader base of ideas than you had, and you know your child best.” It’s still the best piece of advice I was ever given (sorry, Mom). So…I read. I absorb. I question. Anything and everything I can get my hands on - medical and psychological research, books, therapy manuals, diet and nutrition reports, supplement evaluations, legal documents, magazine articles by frustrated parents, physicians, or even more frustrated adult autistics (or autists – whichever you prefer) …anything that will give me an insight into what is best to do for my son. I read literature from the “curbie” view, documentation from both the “genetic” and “environmental” views, arguments and diatribes from the “leave us alone” adult autistic view, and even hate articles from the completely clueless “eugenics-are-us” group. (Now, that’s a group who’s ignorance is truly showing!).
Wading through this massive conglomeration of ink, paper and high technology, I have come to one single, crystal-clear thought.
No one has a clue…It’s that simple. And that complex.
Being who I am, I have often found the standards of behavior and order of thought imposed by the social definition of “normal” to be confining and unimaginative. My son’s neuro-diversity is as much a part of who he is and will become as his red hair and brown eyes. I cannot cure that, nor do I wish to. However, because I am not a “cure-bie,” I am expected by those opposed to the curebie camp not to support research into how the wiring in the brain works and what makes the autistic mind specialize as it does. But I do support it. I don’t support it for a cure. I especially don’t support it for the purpose of eugenics. I support it because it will give me a better understanding of what I can do for my son as a parent and how I can help him become independently able to do for himself.
I do not believe that mercury causes autism, so the assumption by the “mercury group” is that I vaccinate my children without question. Yet, I questioned the efficacy of vaccines since before my eldest daughter was born and ultimately made the decision not to vaccinate my children. Am I anti-vaccine? No, but I am pro-total disclosure and self-decision, rather than simply buying into the party line, and for me the risks outweighed the benefits. And, while I do not believe that mercury causes autism (yes, I put emphasis on the word “cause”), I suspect that over the decades the various neurotoxins contained in the products that we consume nutritionally, breathe in, and take into our bodies through simple absorption through the skin from numerous sources – including vaccinations – played a large part in triggering genetic switches ultimately causing certain alterations and responses, and establishing various behaviors and neuro-wiring that manifest themselves as the symptoms now used to define autism. Translation – although we may have better diagnostic procedures, I personally think this is an issue of evolution… of our species attempting in some way to adapt to the continual bombardment of toxins to which we have subjected our bodies, both internally and externally, over the past several generations.
What I do know is that the issue on all sides is not black and white. As a parent, I can support research into the “whys” if it means that I begin to understand how behaviors are triggered and that helps my son. As an advocate for autistic children and my uniquely individual children in particular, I work for increased recognition and respect of those considered differently-abled (whether physically or neurologically) and outside the norm by society as a whole, while at the same time helping my son learn to cope in an overwhelmingly “normal” world which will steamroll over him if he doesn’t.
No, my son is not a puzzle piece and yes, he has plenty to say although he does not speak. I also understand the need for some kind of picture representation that can universally describe the way any loving parent feels when faced with something – and someone – they don’t have a frame of reference for understanding. It’s puzzling…simple as that. And in the same way that pieces of a puzzle come together to make a whole while still showing their individual edges, it’s not one side of the issue or the other that will be the answer here. It will take all the pieces for the puzzle to come together.
Perhaps, just perhaps, the beginning piece lies in the understanding that we are all on the spectrum...of humanity.
