Criticizing parents is a taboo subject in the autism world, and there are solid, if not horrifying reasons why.
Whether impacted by autism or not, we are all the products of a very dark history in how we handle behavioral differences. And no matter what our beliefs about the divisive autism spectrum may be, the stigma created by Bruno Bettelheim -- author of our darkest moment -- is still felt.
Bettelheim, for those who don't know, believed that you got autism because your mother wasn't affectionate enough with you right after you were born. And as wacko as that may sound to those hearing this for the first time, Bettelheim, back in the 1960s, was the clinical world's rock star; an icon whose every idea was bought hook, line and sinker by the American public. Within this particular theory, he coined the term "refrigerator mothers," and in doing so didn't just destroy the inner selves of thousands of women, he destroyed thousands of families. These were the days of, "Put him in a home, and forget you ever had him."
Now that we know better, we have accomplished much in reversing the damage. But in doing so, have we gone too far in our "don't blame the parents" mantra that we believe our performances to be immune from scrutiny?
When Autism Speaks' video, I Am Autism, was released in 2009 (old news, I know), it so greatly offended the near-entirety of the autism/Asperger community that for once, the infamous, mistake-prone monolith of an organization had to pull back and admit partial error. But while I was just as revolted as others by the video, I was in the minority as to why I was offended.
Most people condemned the first of the video's two sections, in which a threatening off-camera voice states phrases like "I am autism... and if you're happily married, I will make sure that your marriage fails. Your money will fall from your hands and I will bankrupt you..." Simultaneously, doomsday music is heard overhead, and the pictures of autistic kids are splashed over the screen. When combined with the narrative and soundtrack, the children's differentiating poses and actions portrayed them as flawed and/or broken human beings, if not fragile innocents now possessed by a demon.
To be honest, I couldn't get angry. It was just too silly. Though at the time (as the Executive Director of GRASP) I was obligated to publicly decry the obvious inhumanity, I burst out laughing the first time I saw it. It felt more like a parody of Autism Speaks' attitudes, rather than an actual video made by Autism Speaks.
It was the second section, where happy music jumps in and the voices of family members proclaim their strength that they will "fight" autism, because they were "warriors," or heroes that disturbed me. This crusade seemed to be about them, not their kids -- something herein was being taken personally, not parentally.
Upon examination, however, I began to realize that this parent malaise wasn't reserved for only one, partisan section of autism politics. The offending entities weren't just the easy targets of shallow parents who used words like "cure" and "disease" around their kids, or new-age vaccine theorists who referred to their children as beloved, chemical accidents. Albeit in different manifestations, the problem lay in those with my belief systems too. On all sides of autism politics, parents seemed to scream, "Look at me! Look at what a great Mom or Dad I am!"
This impulse isn't fabricated. It comes swiftly and instinctively. In the process of receiving the earth-altering news, parents do find themselves under a microscope. Peers, neighbors, friends, colleagues and family members are watching us to see how we react. And we in turn want to respond to the attention by somehow appearing strong, and perhaps even progressive, or innovative. No matter what we say in response to the curious crowd, "It's the rest of the world that has to change, not my child" or "I will find a cure for my daughter," most of us embrace the attention, and rise to it... instead of the more emotionally-healthy option of rejecting the demands of the spotlight. Granted, if we try to pretend that said spotlight doesn't exist (or not answer direct questions from the "crowd"), we'll negate a lot of our potential education; and it is appropriate -- not inappropriate -- that we begin to see ourselves in a new light, because we will need to seek out new communities in which to belong.
But acknowledging the existence of such attention is not the same as dancing for its satisfaction. When a stranger gives you a dirty look because your child is upset in the supermarket, you might dissolve in shame, or you might react in the other extreme by confronting the dirty-look perpetrator. But neither response is right. If your child is upset, he needs and deserves your attention more than that stranger.
Next on one's journey is often the "crusade" aspect of the autism world, as we find like-minded souls to share experiences with. This has an addictive quality to it. We get lured in, and there's nothing wrong with that. But maybe we prematurely switch to helping others, as the desire to appear good, battles the desire to do good -- in the hopes of creating a mask. For many of us, even working for autism organizations can be safe havens to erase the guilt of past parental mistakes, to run from (mostly husbands) who will not process the diagnosis humanely, or perhaps acknowledge the genetic origin of autism that they clearly carry. These charities sometimes offer the recreation of our public persona; a new aura that differs from someone with unfinished work to do at home. Such a disguise carries the hope of redemption -- when what's really necessary is to confront the spouse/partner in denial, acknowledge those prior mistakes, or have a long, therapeutic cry; and (only then) begin anew.
We progressive and accepting pluralists, especially, will jump to the extremes of nurture (vs. nature) by hovering too much, trying to emulate our children too much, sacrificing our own lives too much, and yes, by protecting our children too much. We may arguably parent better than those who tragically say to their kids "I love you but I hate your autism," (dumb, dumb, dumb), but that's not saying much. And when we err, no one dares call us on it because . . . our child has autism.
No matter where our kids lie on that vast spectrum, be it a 21-year-old who needs help with toilet paper or a 6-year-old math genius; when we over-nurture we destroy our children's true potential for confidence. For if we over-deny them the experiences of failure, they will become terrified of failure. If we over-shield them from potentially-painful emotions, they will not grow. And if in our own lives, due to over-sacrifice, we show no example of what a healthy existence looks like? Then we will have absorbed their challenges as an excuse for us not to grow, rather than addressing said challenges in our children. And then we've arguably doubled our problems.
And finally, parents -- as communities -- seem loathe to want to build the types of collectives that would really improve their lives. These networks provide sympathetic shoulders, and shared information of an indisputable value, but they have limits. To cite but one example: In all my years of suggestion, not once have I seen a regional parents community create a babysitting system wherein parents actively cover for each other. Be it from laziness, martyr-like guilt (over the prospect of enjoying a night out), or an inability to trust others with our children, parents don't get enough of those evenings of great art that would take them out of their world, sports events where they get to yell and scream or more of the "dirty weekends" that spouses, partners, and single parents in relationships truly need in order to create harmony inside the home.
Sacrifice, too often in our world, is part-performance, done for the benefit of our audience. We are very insecure about our parenting because (and not in spite of the fact that) there is so little accountability towards our how we're raising spectrum kids. Those who don't walk in our shoes rightfully don't dare to judge us in our presence. Amidst our long leash (i.e. confusion), sacrifice therein feels like an acceptable fallback strategy.
The great example occurs during the safety demonstration prior to an airplane's departure: You are told that if the oxygen masks drop, that you must place the mask first on yourself, then on your child. And our instinct is always to mentally rebel: "No way! I'm putting it on my child first." But if we don't take care of ourselves, we are worth very little to our children.
Many moons ago, when I was a child with Asperger's, my mother was upset about something that I had done, and my instinct told me, she has to a right to be upset (even if I don't remember the actual offense). If I was to avoid repeating the mistake, then she had some very important information that I needed to hear. But because she was so upset and inarticulate in conveying the information to me, I tuned her out. My mental reaction to her was something like, Are you kidding? Look at you. How's your way of doing things working for you?
Harsh, I know (I was a tough, pragmatic kid), but parenting is so much about "show" rather than "tell." Tell your kid not to be nervous? Great. But if you're a nervous person, your kid will probably become nervous too. Tell your kid to smile and laugh, but if you don't smile or laugh much?
While still the Executive Director at GRASP, I once conducted an experiment. As a small organization, GRASP had always received way more than its proportional share of media coverage. Whether it was dumb luck or brilliance, we usually got press when we strove to be innovative. So in 2012, without telling anyone that I considered it to be an experiment, GRASP would honor five people on the spectrum who themselves were great parents. By that time, the autism world had shown the spectrum's capabilities for career success; but the emotional strength needed for parenthood? Was the world ready?
They were not. We sold fewer tickets, and the gesture generated not one single media piece. The autism world, if not the extended world, was not ready to acknowledge that someone with a legitimate disability might be a better parent than they. In our imaginary warrior persona, or hero-status, we reject the notion that those five honorees might have something to teach us.
I've always said to fellow spectrumites that "Just because you're on the spectrum doesn't mean you don't have it in you to be just as lousy a human being as anyone else."
Well, so too is it truthful that: "Just because you have a child on the spectrum doesn't mean you don't have it in you to be just as lousy a parent as anyone else."
Maybe you're not a bad autism parent. But if the title of this article mildly stunned you, then that's the problem. Even if the reader being a "bad parent" is improbable, in the autism world, we refuse to acknowledge it as possibility. Parents of non-spectrum kids may not be our best judges, but it seems we refuse -- not fail -- to police ourselves. Plenty of my colleagues are questionable parents, and I too say nothing.
Andrew Solomon says it best: We do not reproduce, we produce. So, reject, albeit acknowledge, the microscope, but isn't the whole point of parenthood that it's not about us anymore? None of us are, or ever will be heroes. We made the decision to have a child. And just because we got an unexpected curveball that required more effort, a surprising education and even more money doesn't mean we're elevated into untouchable status. We're doing what we agreed to do when we made the decision to bring a life into this world... our job. We may deserve unique understanding, compassion, and services; but we don't deserve a free pass.
Michael John Carley is the Founder of GRASP, and the author of "Asperger's From the Inside-Out" (Penguin/Perigee), "The Last Memoir of Asperger Syndrome" (TBD), and numerous articles. In 2000, he and one of his two sons were diagnosed with Asperger's Syndrome. More information can be found at www.michaeljohncarley.com.