Once upon a time, back when I first began working with other people’s autistic children, I found myself in a family’s living room surrounded by people hungry for advice.
It was the moment I excel at: Q & A. When it comes to autism, I just get it. The kids make sense to me so I find creating ways to help them reach desired goals relatively easy.
Someone said something about a neighbor being judgmental. I responded with, “They are just ignorant! It is up to us to teach them. They simply don’t know.” I was of course using the word as it was originally intended, before society recreated it and made it into slang. To be ignorant is to be uninformed. Apparently, the people I was talking to were ignorant of this definition of ignorant. As for me, I was so busy teaching that I was ignorant of their ignorance. My use of the word created quite a stir within the minds of these moms, who unfortunately chose not to bring it to my attention at the time, and the rest of my words were suspect. That is, if they were even heard at all.
The reason I bring this up is because the world of autism is presently fraught with Definition Wars. Quite honestly, I think all this worry over words is important, but misdirected. Most often it simply becomes the bullfighters cape; a distraction from the real threat. The fact is, in the living room that day, I was sharing something important. Onlookers are ignorant. They don’t know enough about the situation. That’s what makes them onlookers. It is up to those of us engaged in the world of autism to help them understand. Too many parents (my past self included) spend too many years avoiding the onlookers’ eyes, afraid of the scornful expression we might see in them as they look at our child. Too many parents feel angry and embarrassed when all they have to do is embrace the ignorance and then lead the way into knowing. Most often onlookers are in search of an opinion. Lets give them one, intentionally. Lets teach them how to be with our kids. They don’t know, and they likely grew up hearing it’s rude to ask. Thus the onlookers’ recourse is to create an opinion out of what they know about “normal’ kids, while we avoid their eyes and end up in a self-created world of persecution and judgment.
I have a well rounded understanding of this issue because I’ve lived and learned while raising my boys out of their autism. That day with the many moms, I had something important to share. Unfortunately, the group I was addressing was too distracted by the word ignorant to hear the message. I call this the “law of distraction” and families of autism adhere to this law as if it were as irrefutable as gravity. For me, when my kids were little the word retarded — which simply means slow — felt hurtful. My being hurt by these words was especially silly because my sons actually were officially retarded. It was also shortsighted of me because my sons didn’t mind the word. At least, as long as I didn’t. The problem came from the believed intent behind any word that could also be used as slang. After all, I was never hurt by their other labels– autistic, fetal alcohol syndrome (Now, now, don’t jump to conclusions, I adopted them.) and ADHD.
At some point (likely when I started doing stand up comedy) I came to understand the utilitarian purpose behind words. Body function humor, strategically placed ‘ef’ words, and bedroom observations had them rolling in the aisles. It occurred to me that they loved these indiscretions because I was comfortable, so they could have fun watching me say what they wouldn’t dare. Little by little I learned to strip away the punitive power of any possible word and search for the meaning in the sentence instead. Thus, I cared about the content while the words themselves lost all ability to inflict pain.
That is when we started using the word retarded at home. It was brilliant!
This comfort with the word retarded helped all of my sons. Especially my youngest. In fact, it led to him using it in a most descriptive way: He called himself “Reality Retarded’ in an attempt to explain how naÃƒ -ve he had truly been. Ignorant of the “R’ campaign in autism (campaign to stamp out the word retarded) I proudly shared the story, going so far as to write a blog about it. I was pegged as ignorant (the other definition).
Right about then I started looking around at all the Stamp Out Labels Definition War campaigns for autism. Its truly inspiring how so many people can spend so much time worrying about whether to say autists or autistics, aspergers or high functioning, hyperlexic or good at reading, retarded or “I don’t mean to imply any insult but your child is learning slower than most people in a somewhat retarded fashion’ J Problem is — while everyone is arguing about all these labels, the feeling of arguing is in the air. Our energy-comprehending-children-on-the- autism-spectrum are learning to be hurt by all these words they can barely say, or even understand, with their unique little auditory processing systems.
The whole Definition Wars thing reminded me of that time back in 1999 when David Howard (DC Mayor Anthony Williams top aide) had to resign from the office of the Public Advocate for using the word niggardly in its economic context which has no racial connotations at all.
Unfortunately, the people ignorant of the word niggardly created a stir and a man’s career (and likely his family’s bread and butter) spent a fair amount of time in jeopardy. The word itself and what that might mean became a hot bed for political media attention, even though the actual political issues were buried in the economic paper itself. Surely, Howard’s reporting that the coffers were so thin there wasn’t enough money to adequately support residents, was more important than his use of the word niggardly (which means miserly) in describing how he would have to be in order to get it all done. But no, his choice of words gained more attention than the substance of his economic predictions and solutions. In fact, as I check my opinions on this by asking around if any one remembers the incident, many do. Though none seems to recall anything about the paper he was presenting within which the un-offensive offending word lay. So David Howard retired, not because he was gay (which also means happy) which he was (at least one of these) but because he was too literate for the people he represented. Fortunately, his dictionary endowed supporters made enough of a fuss to have him — at least offered – a reinstatement.
So in my attempt to offer autism awareness and educate the onlooker, I present Rye Shelton, my son. A (used to be) retarded, autistic, fetal alcohol syndromed, touretted and obsessive-compulsive disordered boy, grown into a man. He is an amazing guy who has been busy with the job of healing, blissfully ignorant of the war on words.