Yesterday, I wrote a post about how a dear friend of mine told her son for the first time that there was a name for the constellation of gifts and challenges that help to make him who he is. I told the story about him smiling at the news that he, in his words, “has autism,” as he made the connection that his mom’s friend’s daughter, HIS friend, is autistic too.
In the process of writing it, I dug back into my archives, scouring posts that I’d written on the topic of disclosure, and why I think it’s so incredibly necessary.
In doing so, I found reams of words I’d written over the course of years and years, all pretty tidily summed up in these, from October:
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.
Prompting me to post this yesterday …
But at the end of the day, I came back to click yet again on the link that my friend had posted. Ed note: You get that I’m just going to keep on linking to this until you read it, right? To breathe it in, to soak in it for a while — the heartbreak and the healing and, finally, the hope. And to remind myself why I do this day in and day out. Not to hear the sound of my own voice, of which I am frankly growing weary, but to help ensure that stories like Cara’s are heard. To promise the next generation that they won’t have to live through thirty years of hell before coming to understand that they are, to borrow Julia Bascom’s words in a letter to an autistic young man who had been abused, “not bad or broken. You are autistic, and you are also fine.”
I’m so glad that y’all are here, reading my words every day. It means the world to me. But please, don’t stop here. Start here. Click on the links in these posts and the ones over there in the sidebar under Vital Perspective from Autistic Adults. There are people there from every walk of life and living every flavor of autism. There are folks who talk non-stop and others who are completely non-speaking. Please, see what they have to say about their own lives. I’m begging. Because while I do everything in my power to understand, I will always be a secondary source. Theirs is the voice that matters.
Because, well, THIS …
This is how it starts. One by one, like exhausted swimmers, we pull them to safety. They sit in the boat, confused and scared, afraid to wonder if things might finally get better. And the pilots of the boats signal to one another. I’ve found one more. They’re safe. I’m bringing them home.
Because we are here, now. We are making our own community, our own refuge. Online and face-to-face we are finding each other, reaching out to support, to explain, to advocate. We are abandoning the many labels imposed on us – high functioning, low functioning, Asperger’s – in favour of one: Autistic.
You will listen to us, in the end. You will stop telling us who we are, how we feel, why we are wrong. When you say we have no empathy we will laugh in your faces. We will rescue those you have misdiagnosed, we will break down the doors and bring them out to join us. You will make no decisions about us without us.
We are autistic.
And we are on the march.