Telling our kids about their diagnoses.
I talk about it a lot.
Because I believe in it.
I believe that knowledge is power and knowledge of oneself is the greatest tool imaginable. I believe in honoring truth, both fundamental and individual. I believe that withholding truth creates secrets and secrets imply shame. I believe that our kids are misunderstood by so many, they deserve to be understood to whatever degree possible by themselves lest they begin to internalize and take as gospel the misperceptions of those around them.
I believe that they see and hear and process and understand a whole lot more than we give them credit for, verbal, intermittently verbal, pre-verbal or otherwise.
I don’t believe that a diagnosis creates or exacerbates a feeling of difference. I believe that being different creates a feeling of difference and that the knowledge that others share the same kind of difference creates connection and liberation and hope.
I believe that the only way we will ever demystify the words and remove their current stigmas is by personalizing them, making them real, making them about PEOPLE and not challenges or behaviors or needs. I believe that only then can we truly ask the rest of the world to understand, to exercise compassion.
I believe that labels like autism can serve as the keys to the doors that can otherwise isolate our kids, that make them think they are the only ones, and so too that they can be the keys to the community of autistics waiting on the other side whose experiences, while not identical, mirror our kids’ far more closely than anyone else’s.
I believe that giving our kids the knowledge that we have about them is a matter of fundamental respect for them.
I believe that speaking the words aloud chokes the weeds of shame and waters the flowers of pride.
Although it’s the product of God knows how many conversations, my perspective on disclosure has been most informed by Dr Stephen Shore. Many, many years ago, I had the pleasure of listening to Stephen tell his story. Years later, I had the honor of joining him on a panel to tell ours. But it was that first meeting that validated everything I thought about disclosure.
Stephen was functionally nonverbal until he was five. His parents were told to institutionalize him. The medical establishment had nothing else to offer. His mom had other ideas. As he explains it, she essentially created her own Floortime / DRI models before they existed. She believed that by making the effort to join him where he was, she could reach him. And she did.
Above all, it was this that I took from Stephen’s story:
“I was lucky in that my parents used the word autism around the house for as long as I could remember. We didn’t know what it really was back then but it sure helped explain a lot of the differences.”
His parents simply used the word, and in so doing, they took away its power to marginalize and instead imbued it with the power to explain, to understand, to connect.
All these years later, Stephen is better known as Dr Shore, college professor and world-renowned Autistic speaker and activist.
But if talking about it nonjudgmentally from the beginning is the ideal, where does that leave those who have yet to broach the topic? Well, I’d start here …
First and foremost, before going anywhere near your child, take a deep breath and leave your own anxieties far, far behind. Although it’s true for most of us, in my experience, there is no one more sensitive to the emotional vibes of others than those on the spectrum. Anxiety fosters anxiety; calm allows for calm. If you coil yourself into a bundle of nerves for a BIG TALK, you’re screwed from the start. BIG in this context means TO BE FEARED. Fear is what we’re trying to dismantle, not create.
So breathe. Take it easy. Start with whatever version of “Oh, hey, there’s something neat I’ve been meaning to tell you,” translates into your child’s language.
Your attitude and the way that you approach the whole ball of wax will set the tone. I know that’s a lot of pressure, but I believe it to be true. This fundamental piece of your child is either something that’s at once both challenging and wonderful – or — tragic news that you’re terrified to share. For my money, “It’s part of what makes you who you are, so it must be pretty awesome.” is always going to be the way to go, but that’s just me.
Many have asked for a template for the conversation itself. Again, largely based on Stephen’s model, here’s what I’ve got.
Talk about the child’s particular characteristics. Cite STRENGTHS FIRST, then align their strengths with their challenges. Identify those that can be used to offset each other, or those that might be defined as either, depending on environment (Hint: All of them).
For example, explain that while all of your child’s unbridled energy might be challenging when it comes time to have to sit still in the classroom, it’s why he can stay on the swings for so long even after other kids get tired. Explain that while it might be tough to do math in the way that we need to in school, it’s because he thinks in a different way that means that he is incredibly creative. Explain that while you know it can be hard to have to focus on things that she doesn’t really like to do, autism is also the reason that she has such a boundless and enviable passion for the things that she does love to do.
Explain that your child’s matrix of challenges and strengths, while unique to them and beautifully and perfectly arrayed, has enough commonalities with others to have a name. Tell them what it is.
If it’s developmentally appropriate, tell them about the luminaries who feature prominently in history or popular culture who are or were believed to be on the spectrum .. Newton, Einstein, Grandin, you know the drill.
Otherwise, talk about people who you know who are on the spectrum. Some may speak, some may not. Some may be commercially successful, some may be more unconventionally successful. Talk about how much you respect them and what they have, in various ways, accomplished. Tell your child how much you’ve learned from them. If you don’t have those people in your world, seek them out. If you don’t know where to find them, click over to any of those blogs on my blogroll under Vital Perspective from Autistic Adults. I know of no better way to show your child that you’re listening to them.
And wrap it up with the fact that autism is a pretty neat thing. That you know that it’s not always easy for them, and that it can sometimes make them feel different, but that it’s also what makes them fabulous, and not really so different after all. That part matters. Why? Because of the kid who put the gun to his head to try to ”kill his autism,” because all he knew about it was that it was what made his life hard. That’s why.
So there it is.
Disclosure is not and never will be a one size fits all proposition. There is no age nor grade nor time of year that anyone can uniformly recommend to talk about all of this, other than from the moment that you know. The language that I’ve suggested here is meant to be a guide that you can translate into your family’s language. Much of it, if taken at face value, would be wholly inappropriate for my own daughter. For example, I have never told her that Newton was autistic because she hasn’t the foggiest idea who Isaac Newton was, nor would she be particularly impressed if she did. But I’ve talked at the dinner table about my autistic friends and how much I love their company and their insight. I’ve never sat her down for a rundown of strengths and challenges because that’s just not where we are, but I’ve told her that autism is part of who she is and I think it’s pretty damned cool.
The bottom line is that these are personal decisions and I have no idea nor do I claim to know what is best for you and your family. What I’ve written here are my thoughts on the topic as they’ve come together over years of talking (in various ways) to autistic people across the country and across the spectrum about their experiences and how they came to know who they are.
And this, which I wrote a long time ago in a conversation about person-first language …
My girl will undoubtedly face ignorance as she steps further into the world. When she does, I want her armed with an impenetrable wall of self-esteem. Of belief that just as there are serious challenges in her autism, there are also gifts — her incredible memory, her uncanny ability to repeat what she’s heard or read, her pitch-perfect imitation of accents — and so much more that we will have the joy of watching emerge as she grows.
When someone spits ‘autism’ at her as a dirty word, I want her to turn it back on them, framed as her own. “Yes, I’m autistic, so? I’m damned proud of it.”
Autism isn’t easy for me to talk about. This is why …
Because it isn’t mine. It isn’t, as neurotypical parents, ours. Rather, it’s part of who our children are, and it is therefore theirs to own, to define, and, God willing, as challenging as it may be, to take pride in.
Oh, and when you’re done talking (or before you start!) buy them this …
(Click on it to buy it.)
Because isn’t that the whole point?
Stay strong friends. You can do this.