[Adapted from my talk at the Autism and the Pursuit of Happiness Conference at the University of North Carolina, part one of a six-part series about autism for parents, professionals, autistic individuals, and other human beings. ~ rah]
My son Nicholas is 14 and autistic. I’ll tell you just a little bit about him.
When he was one and a half he lost speech and was nonverbal for two years. He remains limited in speech, and nontypical in communication, socialization, and cognitive abilities. He has echolalia and OCD. He for years was self-injurious: he wore the stereotypical football helmet to protect his head from all the head banging against floors and walls.
And Nicholas is absolutely the best kid in the world. He was then. He is now. He is made of love and joy.
He was prediagnosed with autism right around when he turned 3. He was formally diagnosed at the University of Washington when he turned 4. And he has benefited most — or, rather, been supported best — by occupational therapy that has provided for sensory diet, expressions, and releases and motor-skill practice; speech therapy that has helped Nicholas form at least workable speech cheat-sheets that relieve some of his stress; and especially some core TEACCH strategies — micro- and macro-scheduling, calendars, lists, and sensory breaks.
He is supported most of all in his happiness and well-being by two things, when they’re there: first, facilitating his development of friendships with peers and adults in school, camps, and the community.
And, second, when he gets to experience the unconditional acceptance and love that he himself offers to everyone.
I said my son is 14, and that’s when a formal transition to adulthood process begins in schools and support organizations. Like other parents, I’ve seen it coming, and tried to prepare him — and me — for what adulthood as an autistic looks like in this society, especially by increasing my awareness of perspectives of autistic adults. 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.
But let’s first 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.
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, as most parents lack although that’s increasingly changing, 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 autistic children. With many other differences, too, that button would be pushed.
With autism anyway, many parents then spend most of their kids’ childhood trying to find that button and to push it.
And the kids know it.
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 most parents usually don’t even see a model by which this child can have a good and happy life other than by stripping away the autism. To be fair, they don’t look.
But 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. All that exists is the same package, in 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. Which do we want to choose for our child?
But how hard is it for a parent to make the transition? It’s really hard. It means accepting not just your child as your child is.
For parents who have been pursuing a different approach, it also likely 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 often 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.
Here are links to all the articles in the series. If you like a post and would be so kind as to share it on social media or leave a comment on the page, I would deeply appreciate the sharing: