So, I have been reading a lot of autism advocacy related stuff today, many of the points I support, sometimes the delivery seems counter productive, but by and large it is well done, and the intent is absolutely what needs to be said. In essence a great deal of it comes back to needing to expand the dominant paradigm, normalize behaviors that folks fear or worry about out of ignorance, understand that nurture is ever so important. I mean seriously, when you read some of the diagnostic criteria for autism spectrum, mental illness is so common in the population that it is believed and accepted to be a normal part of being on the spectrum. It really is not the case, it is the hijacking of a healthy sense of self identity from being labeled, demeaned, bullied, and often abused because one happens to think and interact with the world differently. Those of us who are verbose and extremely verbal can often pass un-noticed, but the cost can be substantial as we keep forcing ourselves to act in appropriate manners, suppressing very natural tendencies that are in fact…harmless. Yes, we need to learn a few rules of etiquette, just like everyone else does, understanding of personal space and personal property are important concepts, but when the kid messes it up, the last thing they need is to be insulted, demeaned, or yelled at. Violent words or violent physical acts are expedient, and in our time obsessed society expedience often trumps healthy nurturing techniques. Even I slip up sometimes with my daughter, when I am stressed or overwhelmed myself, I can be short, because I can see the eyes looking, I have spent my life fearing the judgment of others, but I work hard to be my genuine self everyday. I am also getting better at not being reactionary with my daughter as a result of working to be more at ease with myself. An example of being more genuine occurred today; I went shopping for a few things, instead of pulling down my hoodie, taking my hands out of my pockets where I am fiddling with things, and removing my sunglasses, I kept them on. I kept them on because even though I dislike people judging and making assumptions, I cannot prevent their ignorance, but I can keep myself from being over-stimulated by doing things that are in fact, in my best interest. And I have heard the dominant assumptions many times before, folks who have something to hide, or are on drugs, etc. When in many cases, it has nothing to do with any of those things. But the dominant paradigm favors assumptions based on what they perceive in object reality, filtered through a ignorant worldview…and once again that is not an insult, and it is why it is imperative we expand the dominant paradigm to stop judging what they don’t understand, by educating them on both the reality of folks on spectrum, or a host of other social issues based on assumptions, and by working to normalize these things so they are not strange, frightening, etc.
I have seen so much speculation on “why are we seeing more ASD diagnosis”, part of that is the diagnostic criteria of course and a increased understanding of these things. But, we also live in a world that is far more stimulating and overwhelming than anytime in human history, our very use of public space is inherently harmful to many on the spectrum who struggle with hyper-sensory issues. You add in a healthy dose of rigid thinking that fails to recognize certain behaviors as being something far different than what they assume they are seeing, and you have huge levels of frustration. It is why I do not lie to my daughter, lies have been so damaging to me, being demeaned and bullied for being simply curious, when folks assume some nefarious purpose. I recall as a child I was at my friends house, they were very welcoming over all, a nice Mormon family. I was in the hallway staring off into space and their eldest daughter, who was two years younger than me had her door open, and apparently she was getting changed…whatever, I was not remotely a sexual being then, even though this was around the time another peer had started abusing me. I don’t even think I was particularly looking at her, I was waiting for my friend Sean to get something. Well, his mother, normally very accommodating, let me know in no uncertain terms she thought I was being inappropriate, and I made the situation worse by countering with my matter of fact answer “what? I have sisters too, not like this is anything new” I paraphrase of course. Well, she did not take kindly to that, scolded me, and because I was so angry, embarrassed and frustrated that she assumed I being deviant or doing something wrong, I promptly started bashing my head into the wall. I did that a lot as a child, but it was rooted in anger, embarrassment, and frustration, when people judged me and made assumptions, it not only frustrated me because they clearly did not understand what they were seeing, it made me feel deviant, bad, that there was something grossly wrong with me. See, some of the “social” issues are related to mirror neuron function and missing cues, but plenty of them are because the dominant social paradigm is itself ignorant, they see something and thus they “know” what is going on, without ever asking, without ever wondering about how folks can think so very differently. I am logical, I am rational, I am curious, to the point that when denied knowledge I would try to find ways to seek it out.
Another example…feminine hygiene products, these things baffled me. My mother will tell you that on my 11th birthday the first thing out of my mouth that day was “what are tampons used for?”, I had been asking for YEARS, because…I was curious, nothing more, nothing less. As a matter of fact, for a long time I thought I was deviant because I even stole a few maxi pads and wore them for a few days, but at that age, as I look back, I understand now, that kid who I once was, who was so long ago beaten into submission, was once again, just curious, and they had a pleasant light fragrance that I enjoyed, a baby powder scent. I was not some sexual deviant, I was not gay, I was not even experiencing gender issues in that particular event, I was freaking curious.
Curiosity still defines me, it drives me to try and learn so much about everything around me, I may be bad with names and dates, things that can inhibit testing for many, I happened to develop some generalized ideas of era and chronology so I could normally get the numbers and answers off the tests, but when I fail to produce these things folks assume I do not “know” something, but I know a tremendous amount of data on so many subjects that most folks I know have at many points called me the “smartest” person they know. I am not of course, I am just an information sponge with a few perceived disabilities, but honestly it is what people say and how they act that defines them, not some name given to them at birth. Interestingly enough, in the world of online gaming, I tend to remember people’s handles quite readily, because they pick names that define them, it is an extension of who they perceive themselves to be or an image they want people to believe, and it is much more real to me than the name on their birth certificate, it informs me about who they are in a way a normal birth name never will, save for maybe details on cultural or ethnic background, which I find mostly unimportant as I respect people of all origins and backgrounds, it is mildly insightful if they have an accent and show some cultural traits related to it, otherwise it is just a holdover from immigrant ancestors.
So many of these behaviors, like swaying or head rubbing, are harmless. It is when the dominant paradigm makes judgments and hasty assessments based on a lack of knowledge and understanding that harm, demeaning, and even trauma ensues. It is the failure to understand that for some people, these behaviors are perfectly natural, they are not nefarious, they are not perverse, they are not deviant, they are curious, or they are spacing out and not doing anything related to what they assumed. I cannot count how many times I was chastised for failing to show respect, not because I would not have naturally wanted too, but because I was lost in my head, the ole “head in the clouds”, thinking, questioning, pondering. So in a way, my very intellect began to be harmful to me, I was not always free to think in a way that was natural to me, to learn in a way that is natural to me. And somehow this defines me within the dominant paradigm, it is deficiency, disability, when it is none of those things. Yes, some of the spectrum have severe quality of life issues, but we still denigrate, infantilize, or inhibit even their healthy sense of self identity, by labeling them as low IQ, or “non-verbal for life” and thus insisting upon only teaching them “life skills”, when that is one area they won’t flourish in, so stop wasting energy on the Band-aid approach and find their gifts, their joy, their healthy sense of identity. And maybe they will never hold down a job, but that does not mean they are without worth, basing someone’s entire worth on employability is myopic and limited in perspective, we need our difference, it pushes us forward. Stop trying to re-write every bit of our genetic code with labels of deficiency, instead we need to understand how out of balance society is, and in the extreme cases, then and only then do we correct the genetic damage if the technology is available, but don’t cull the entire autism spectrum genes from the species, that is paternalistic eugenics, embrace neurodiversity, target only the severe and truly crippling genetic damage, and otherwise, make space for us, take the time to understand us, and for all those holding to rigid ideology in their “Christian nation”, listen to Christ, stop judging, after all, I have found plenty of room to forgive those who caused me harm, because I understand the patterns that have resulted in allowing people having things so very wrong. And if the demeaned can forgive those that demean, then it is not much to ask, that those who are in the dominant position take a few moments to understand us, get past ignorance and fear, so that all us, through our own endeavors, in the myriad ways they occur, can contribute to the collective well-being and knowledge of our species, to ensure a better and brighter future for all, instead of just those currently favored as well adapted by whatever the dominant paradigm in that particular culture or nation is. Let us be curious, let us comfort ourselves, let us be ok with who we are instead of saying we are defective, and watch as the frustration lessens, as meltdowns become less frequent, when folks listen with open ears and minds and hearts.