(Beginning Note: In this post, I’m not assuming that all parents of children found to be on the Asperger’s/autism spectrum are distraught; that’s not a universal emotional response. This post simply addresses those parents who are.) 🙂
I haven’t had much of the courage to visit the websites and blogs where parents of autistic children can be found, unless the parent themselves is also on the Asperger’s/autism spectrum (and there are plenty of the latter that I follow and love!). Perhaps this is because so many of the former come across to me as being predominantly negative about their child’s neurotype.
I have seen some of these comments and articles in passing; I read a lot and search a lot, and the more one does this, the greater the chances of bumping into this sentiment. Or should I say, tripping over it, because that’s how my system reacts: it falls down.
I break a little inside. I inwardly shed a tear or more for their children.
I would like to reach out, as an autistic adult, to all the people involved–this time, primarily through the parents themselves.
Dear Distraught Parents,
Hi. I’m an autistic female. I’m probably close to your age, maybe a little older than some of you with younger children. I’d like to reach out specifically to you. To build a bridge, so to speak. To see if I can maybe help in some way.
I hear your sadness. I sense your devastation. I can feel your hopelessness, your powerlessness. Ever since you received the news of your child’s diagnosis, your world has turned upside down. It used to revolve around the sun; now it revolves around a single word. A word that very few parents are particularly excited to hear: autism.
Overnight, autism became the boogeyman, the monster that stole your child away from you in the dark. A fog descended upon your world. So many doors were slammed shut in an instant, leaving only uncertainty and hours and hours over the span of years of intensive therapies, with an unknown outcome at the end, but you’re pretty sure that it’s not a pot of gold at the end of a rainbow.
You shed tears, late at night. You held your child–or maybe not, if they wouldn’t let you–and screamed toward the ceiling and the sky, wondering, out of 68 other children, why yours?
The “experts” in your life, be they doctors, counselors, therapists, the diagnostic criteria, website authors, (fellow) bloggers, other parents in the area or online who are further along in their journeys than you are, and so on, have likely delivered what has been bad news. They’ve told you about all the things your child has difficulty with, challenges in, impairments of, etc, and as a result, all of the milestones your child will likely never meet, the friends they’d never make, the universities they’d never get into, the degrees they’d never earn, the jobs they’d never land, the partners they’d never marry, and the children they’d never have.
How am I doing so far? It’s also likely that the experts in your life have been more current and optimistic, and that the news they’ve given you isn’t quite that bleak. If that’s the case, this is wonderful! If I’m singing your song so far, however, or you know someone whose song I’m singing, please keep reading.
I might be autistic myself, but that doesn’t mean I can’t imagine myself in your shoes. I know that simple imagination is not the same as living the nightmare, but it’s something.
The first thing you might have noticed, if you’re new to your situation and the wounds are fresh and the pain is still white-hot, is that if I hadn’t told you that I’m autistic, you might never have been able to tell. You might never have known.
That might tell you something else: that I’m capable of more than you might have thought. I’m capable of empathy, because I feel your heartache. And if I knew what you knew, and that’s all I knew, I would probably feel the same way.
I could very easily have found myself in your shoes. I didn’t know that I was autistic until a year ago yesterday.
I’m 39 and a half.
That means that, given the fact that autism has strong genetic roots, genes that are positively selected to be passed on to one’s children, and given the fact that my partner may also be somewhere on the autism spectrum, the chances that any children we had would have been autistic are about: 100%.
In a parallel universe, I am where you are. I can see it very clearly.
The only reason I’m not is because I never had children. But I got dealt news of my own that blew my mind and changed my life irrevocably: I’m autistic myself.
One year and two days ago, I never had any idea. Not even the first clue.
But you know what?
It was the biggest relief I have ever experienced. I was Mind. Blown. Nothing has ever been the same again.
I can hear some of you now…
“Relief? You call this relief?? You are out of touch!”
I understand. You might think I don’t, but I do.
Because although I can’t speak for your child, I am like your child. I meet the same criteria, which means I do similar things and have similar struggles. The only difference is that nobody picked up on it, because back then, there wasn’t much to pick up on.
But I suspect that I faced many of the same difficulties. I made the same movements over and over. For hours. I became irritable when pulled away from one activity to do something else. I threw what was thought to be a temper tantrum when the babysitter made my peanut butter and honey sandwich the “wrong” way. I became distraught when a schedule underwent a change. I screamed when the lines on my high socks got twisted when she was dressing me, and I kept screaming until my mom straightened them out for me. I took two or three hours to eat dinner. I picked up on–and emulated–temper tantrums thrown by other children in the grocery store. I became irritable very quickly in public places. I’m sure there were times when I embarrassed my mom by making a scene, and I’m sure she drew The Stare from other people.
I struggled in school, too. Bored half to death with the rudimentary subject matter and completely clueless about how to make friends, I was painfully shy and drawn to books instead. I sat and stared into space and blocked out the world. I was incessantly admonished for one reason or another.
There was no such thing as an Individual Education Plan back then, nor was there much by way of programs or specialists. They would have been hopelessly out of touch anyway; they didn’t even have the criteria right.
With any luck, you’re beginning to understand how I’m like you…and your child.
So far, most of the experiences I’ve written about are tinged with negativity.
But that’s not the whole story. Despite the challenges we faced in those early years, in a backwater part of middle-America (which lags behind the rest of the world in its understanding of autism), during an equally-backwater time period, I persevered. I won’t lie; it took a lot of emotional and cognitive elbow grease. And teachers were of no help, not even for the daily bullying. We had no internet, only the library, which was 20 miles away. There were no websites or support groups. Homeschooling wasn’t even a thing at that time.
Do you know who my single most significant source of support was?
She didn’t know what I was, so there was no word to hate. She took me at face value and accepted me as I was, quirks and all, some of which weren’t so flattering or fun. There were no doors to slam or dreams to cross off one’s list.
Would it have been the same had I been born 30-35 years later and diagnosed as a child? Heaven only knows. Parallel universes and all that.
What I do know is that I became an adult that she could be proud of, even when measured on the non-autistic meter stick. I had all the essentials: honesty, integrity, sensitivity, caring, logic, discernment, and so on. I even had a few unusual sparks: creativity, individuality, intuition, unique expression, a natural resistance to peer pressure, and a mind of my own. Rather than worry about me more, she worried about me less.
What happened that gave my story a happy ending (thus far)?
Open, supportive, affectionate, patient, balanced, and encouraging parenting, and…
She did it right, but I’m not saying you’re doing it wrong.
The key is to forget most of what you’ve been told about autism. Look at your child and see him or her for who he or she really is. Try not to see The Autistic Child, try to see My Child.
Let’s explore each of those points in turn:
Point 1: “Try to forget most of what you’ve been told about autism.”
Those people might think they know a lot about autism, but the truth is, they probably don’t. They’re well-versed in the shortcomings as perceived and recorded through an egotistical outsider’s lens, complete with their human tendency to carry bias.
They’re not fortune-tellers. They probably don’t even know your child all that well. They have no idea what he or she experiences or what he or she is capable of or destined for.
They don’t even have a contemporary grip on what autism even is. So it’s important to take them with a grain of salt and try to avoid putting them on too high a pedestal. They don’t know the future; only a higher power knows that, if you’re inclined to believe in one. The future, for our purposes, is unwritten. And most importantly, so is their future, for theirs.
So, please try not to imagine the worst. Remember the line in “The Field of Dreams”: “if you build it, they will come”. It might sound cheesy or unrealistic, but it’s accurate to apply the statement to life in general, especially your situation: think good thoughts, and good things will come.
To do that, one probably has to heed my second piece of advice (Point 2):
“Look at your child and see him or her for who he or she really is. Try not to see The Autistic Child, try to see My Child.”
I know it’s tempting; after all, your child’s autism spectrum neurotype is an integral part of who he or she is. The two cannot be separated.
This is precisely why I believe that parents of autistic children must find a way to make peace with autism. I would venture to say that it’s almost imperative that one go further than that: embracing autism.
It might seem like a pipe dream, bu ultimately, it isn’t. This becomes especially perceptible when one begins to venture–and expand their info-quest–beyond what the “expert” talking heads have to say.
This is easier to accomplish once one realizes the incredible gains to be made in pathologizing the autism spectrum. Everybody involved stands to make a lot of money: the doctors, the counselors, the therapists, the puzzle-pieced “charity” and “support” organizations, and so on. Ironically, the same people who are hell bent on convincing you that the sky is falling, and totaling up the numbers of hours of various interventions your child supposedly needs. I won’t claim that your child doesn’t need intervention, but it may not need to involve the kind they’re advocating; it could well be something else entirely.
The first step is to look at your child for who he or she really is, as a human being and a unique individual. All the parts are there; this includes the brain, even if it’s wired differently.
Given the chance, your child likely has hopes and dreams, and most of these will be quite attainable, given the right support. They can almost assuredly do everything I do: laugh, cry, play, think, be friends, feel, connect, etc. The catch is that they might have different ways of doing it.
But “different” doesn’t necessarily mean “less”. It’s a matter of finding one’s own way. If you’re going to take the road not taken, you’re probably going to end up clearing your own trail. The greatest movers and shakers throughout history have been those who did just that. As Steve Silberman has pointed out in his book “Neurotribes” (which I can’t recommend enough), these same people who are singlehandedly responsible for many of the creature comforts that we currently enjoy hundreds of years later, also displayed traits that eerily resembled the autism spectrum diagnostic criteria of the present-day. Not every autistic child will grow up to do those kinds of things, but practically everyone who has, has exhibited strong autistic traits.
As for myself, I became a doctor. My autism actually makes me better at what I do than I would be if I weren’t autistic. I can zero into details with keen perception and insight. If I weren’t autistic, I might gloss over important nuances. I’m also married, with two cats. I drive, I’m creative, I write music, I blog, I travel, I have good friends, and I’m close with my family.
None of this is out of reach for 99% of autistic kids. I’m nothing special; every autistic person I know is talented in some way. And all of them are amazing. I know almost 1800 of them; there are maybe 20 whom I don’t like so much; everyone else is gold.
My life has been more interesting than most because I’m autistic. My talents and skills are emphasized more because I’m autistic. My insight is powerful because I’m autistic.
Hating autism isn’t the answer. If you need to get mad at something, get mad at the bias in the research literature. Get mad at the people who try to convince you that your world is over unless you subject your child to thousands of hours of therapy, while simultaneously diverting thousands of dollars away from what should be your child’s university education, into their pockets. Get mad at the “charity” organizations that rake in billions of dollars and shunt that funding away from supporting efforts that would improve your child’s life, and toward efforts to ensure that wonderful people like your child are never born.
Get mad at them. Then, channel that energy into seeking out real help. The autistic community could be of huge support; gaining insight from us could actually prove more constructive and therapeutic than thousands of dollars in therapy.
Above all, erase the slate; the writing you believe you see is actually an illusion. Nothing has been written down yet. Look at the child in front of you. Love them where they are. Encourage them in all they’re interested in and all that they do.
They’ll probably shock you…in a fantastic way. 🙂
How To Find Your Autistic Child’s Voice ~ February 2, 2017
Autistic, Staring, and Silent ~ January 19, 2017