[This six-part series is adapted from a talk I gave at the Autism and the Pursuit of Happiness Conference at the University of North Carolina Asheville.]
My son Nicholas is 14 and autistic. I’ll tell you just a little bit about him.
When Nicholas was one and a half he lost speech and was nonverbal for several years. He remains limited in speech and nontypical in communication, socialization, and cognitive abilities. He has diagnoses of obsessive-compulsive disorder and tic disorder. For years he was self-injurious: he wore a football helmet to protect his head from all the head banging against floors and walls, stabbed himself with pencils, and scratched his arms and legs so deeply they’d bleed.
And Nicholas is absolutely the best kid in the world. He was then. He is now. He is a light. He is made of love and joy.
Nicholas was prediagnosed with autism—that is, a soft diagnosis by school-system personnel rather than an official diagnosis—right around the time he turned 3. He was formally diagnosed at the University of Washington in Seattle just after he turned 4.
He benefited most from—or, rather, was supported best by—a few things. First, occupational therapy provided sensory feedback and motor-skill practice for Nicholas and helped him connect physically to the world.
Second, speech therapy helped Nicholas form at least workable speech cheat-sheets that relieved some of his stress interacting with other people.
And, finally, Nicholas benefited immensely from some strategies based in visual structure taught by the organization TEACCH. These strategies include utilizing micro- and macro-scheduling using pictures, objects, or words, a scheduling calendar to help Nicholas anticipate what’s coming next and relieve his anxiety about it, chronological check-off lists, and visual labeling with pictures to help organize his environment. He also was helped by a regular sensory diet, with sensory breaks scheduled throughout the day.
Those are critical therapeutic and structural approaches. But what benefited Nicholas most in his happiness and well-being, and what does still, are two things: first, his development of friendships with peers, especially, and also adults in school, at camps, and in the community. People like Nicholas, but developing friendships is a challenge for him and often requires facilitation.
The second thing that makes Nicholas happy is a lot like what makes everyone happy: when he gets to experience the kind of unconditional acceptance and love from others that he himself offers to everyone.
I said my son is 14, and that’s when a formal transition to adulthood process begins in U.S. schools and support organizations. Like other parents, I’ve known this transition was coming, of course, and tried to prepare him—and me—for what adulthood as an autistic looks like in this society.
One way I’ve done that is by increasing my awareness of the perspectives of autistic adults—talking with them, reading their blogs, hearing their presentations on community panels and at conferences. I’ve been engaged with the adult autistic community for a good while in different ways, and of course that’s what I should have been doing from the very start of my son’s childhood to parent him with the fullest, best-informed perspective.
But let’s go back toward that beginning, toward diagnosis. I’m going to be suggesting today some value contrasts for parents, families, professionals, community members, and even autistic adults to consider. The values contrasted are not always opposites, although sometimes they are. They aren’t always necessarily mutually exclusive, either.
So, going back to the beginning, the first value contrast I’m going to talk about is the most basic one: ACCEPT OR REJECT.
A parent without a background touched by autism—most parents lack such a background—gets a diagnosis of autism for her or his young child.
How many of these parents do you think would push a button to take their child’s autism away?
The answer is all of them. Every one of them. It’s not even really a question. Let’s say 99.9 percent—and that’s only to account for those people who are afraid to push buttons.
Let me tell you, also, that it isn’t just for autistic children. With many other differences, too, just as terribly, that button would be pushed.
With autism, many parents then spend most of their kids’ childhoods trying to find that button and to push it—trying to cure and eliminate the autism.
And their kids know it. They feel it deeply, on every level. An essential aspect of who they are is being rejected. They are being rejected.
We all instinctively want our children to be like ourselves. That’s what we know. Everything else is unknown: it’s scary, it’s threatening. It threatens our identity. It threatens our belief in our ability to parent well.
With autism, and the way information is presented by medical and therapeutic professionals, most parents usually don’t even see a model by which their child can have a good and happy life other than by stripping away the autism. To be fair, they mostly don’t bother to look.
So that becomes the goal, stripping away the autism: we reject autism and fight for a cure. And we’re typically immersed in a medical model that doesn’t even have a language other than that of pathology, disability, cure, and correct.
But there comes a time later in life when the answer isn’t 99.9 percent anymore. Many, many parents wouldn’t push that button anymore. Many family members, professionals, and just people in the community wouldn’t push that button anymore.
Some still would.
But let’s talk about the ones who wouldn’t.
The young children have become older children or adults and are now accepted and loved exactly as they are. You wouldn’t push the button and take away the autism, because that would be pushing a button to take away the person you love.
You don’t differentiate anymore, the person here and the autism there, seeing everything you regard as negative as autism and everything positive as “the real person.” All that exists is part of the same package, the whole person. You don’t reject. You accept.
How do they—how do we—get from one place to the other? To come to recognize that child—that person—as an individual to be accepted and respected rather than an object to be acted upon?
And extending that, how do we all help parents of younger children—and then professionals and then society more generally—move through rejection to acceptance faster or, much better, even to skip the rejection phase altogether?
What a difference for an autistic person: the possibility of lifelong acceptance versus the possibility of lifelong rejection. One life or the other, we can presume, would look very different. As parents, which one would we want to choose for our child?
But then, let’s be honest, too: how hard is it for a parent to make that change?
It’s really, really hard. It means not just accepting your child for who your child is.
For parents who have been pursuing a different approach, it also means accepting that your parenting for some number of years—for your child’s lifetime thus far—was injuring your child.
To shift to a model of acceptance means consciously realizing you’ve been parenting your child with rejection. Wouldn’t most of us, instead, tend to cling to what we’ve done and what we know and defend it with all our being?
It requires a fairly dramatic bravery and self-recognition to make this transition and to move forward with not just acceptance for your child but also forgiveness for yourself for doing the most unforgiveable thing: parenting poorly and hurting your child.
The same holds true for organizations and professionals: what does it take to admit that the good work has not actually been good but, instead, has caused great harm? That’s difficult stuff.
Some of the most urgent work to be done in the autism community is to overcome the dominant cultural model based on cure and to help parents, families, professionals, and organizations make this transition.
Then of course the even bigger paradigm shift will be to have the dominant cultural model be acceptance from the start.
Here are links to all the articles in the series. If you like a post, please share it on social media or leave a comment on the page:
Part 1: Accept or Reject
Part 2: Grieve or Live
Part 3: Support or Save
Part 4: Acceptance or Self-Acceptance
Part 5: You As Autism or You as You
Part 6: Independence or Connection
JUST WOW. Thank you.
Very well written I wish I had read it before to help me see things from his eyes.I took him as it is but felt I din’t do anything much to help ….though tried and travelled for some cure / help though all the while knew it won’t be ever cured ..something inside me died with the diagnosis .