One of the best experiences of my life was four decades ago at summer camp, Camp Killooleet, in Hancock, Vermont. I went for eight weeks each summer for five years. It was a magical place and time and the favorite part of my childhood. I cherish that camp and those people and those years, and they have all stayed with me.
When I was 8, maybe 9, late in one of the earlier summers, so in 1976 or 1977, another boy in my cabin came to me and said, “Ray, you’re my only friend.”
This sharp memory might be remembered as affirming, but instead I remember vividly the feeling in response I had and now, with perhaps only a slightly more sophisticated emotional palette, I can describe that response as shame.
This socially awkward boy was bullied and victimized. In fact, in most of those years there was an outcast, or maybe two, a boy who didn’t fit in with the larger group well, or who was picked on casually and cruelly.
I was small for my age, and as was true in my school classes because of my late-August birthday, I was the youngest of our group, so even smaller relatively, and I was cowardly.
I think when the child said that to me, I was not only ashamed but also afraid.
I didn’t want to be his friend. I didn’t want my lot cast out with his. And I just didn’t like him very much, whether that lack of affection was genuine or what was felt through the prism of a boy essentially labeled as dislikable by his awkwardness or difference.
I remember four such children in assorted times and settings where my choices and behavior as a child myself were insufficient or just plain wrong.
I may sometimes have seemed kinder, or acted more kindly—“Ray, you’re my only friend”—but I wasn’t a champion for this boy or those others. Terribly, no one was.
I remember his name, of course. I remember all their names.
I am 49 years old. I turn 50 at the end of August.
I have any number of people I care about, from my past or present, within a year or so of my age who seem to be having especially dramatic things happening for them, or making choices that effect deep changes.
In my first year at Georgetown University, starting in fall 1985, I played Boggle a lot with a woman I later married and a friend who lived across the hall a door down on the third floor of New South, our freshman dorm. He was from Tennessee, and he’d usually bring his spittoon with him into whatever room we were playing in. He may have been the first person I ever knew with a Southern accent, or for that matter who was Southern, and this young man was both fun and funny and yet entirely a gentleman. He had a heart attack this summer and bypass surgery last week.
He seems to be recovering well.
When I was first put in as lead of the book-publishing team and imprint Lark Jewelry & Beading, formally at the beginning of 2010, I had two extremely talented craft editors working with me who were both, again, within a year of my age. One of these editors contacted me a few weeks ago for a reference for a scholarship. She had moved to Indiana and continued with craft editing for some years after Lark’s Asheville, North Carolina, office closed, and now she was going back to school—to become a pastry chef. Soon after, she received a different scholarship that required her to start school right away, which she agreed to do while needing fast assistance in finding housing. The school, it turns out, has a relationship with a convent, and that’s where she’ll be living at least until year’s end. At 50, one of the country’s premier craft editors is becoming a pastry chef and living in a convent. Such a profound act of re-creation! Oh, and incidentally, just to make her shorthand bio more fun, her tall, gentle husband is a motorcyclist physicist.
This summer, too, a man born earlier in the year I was born, a man I knew primarily in his professional role, who deeply impacted my son Nicholas’ life for the past handful of years, as he impacted so many others’, who I can only describe as decent, caring, heart-centered, and utterly humane, and who provided a safe, respectful, and loving space for everyone who knew him—this man took his own life. (The National Suicide Prevention Lifeline is 800-273-8255, https://suicidepreventionlifeline.org.) A service was held for him last week, and so very many people he touched came to honor and celebrate his life, offer consolation to his wife and family, and cry.
Among other things, it made me think about if this gathering would have even been possible if the man were still alive; if so, how impactful it may have been, and the words spoken may have been; and how insufficient we sometimes are, and I often am, in honoring the people we care about and love, and letting them truly connect with us, as well.
Last year, a dear friend much, much older than me, and even more wiser than me, celebrated her 50th birthday, and she did this remarkable thing. She reserved the upstairs space at a wonderful Asheville champagne bar and bookstore, one of Asheville’s very special places, and she invited friends and family to come toast her.
It was a beautiful and heartwarming night, soft and humorous and magic. Nicholas, my son, went with me, and it really was all just perfect. My friend created it, and I suspect it was even more a gift for the people who loved her than it was, I hope, a beautiful experience for her.
I’ve thought about it occasionally and a little jealously as I’ve approached turning 50, even as I realize I don’t have the grace, wit, or creativity to do something quite like that. More likely, more like me, I thought, for my son and me to head down to the coast one weekend and spend a few days at the beach and go to a few nice restaurants, and call it good.
But time passes so quickly, and people pass, too.
Maybe, in addition or instead, I should come up with a gift I can share with my friends.
I haven’t written much online recently, not on the blog, especially, and as well I’ve generally been posting less on social media.
This diminishment reflects a confluence of several things, including extra attention given to medical challenges still unfolding for my son, Nicholas.
Another significant factor, I think, was a friend asking me over the course of a couple of conversations, “Who are you writing for?”
The context originated with criticism of my blog post Autism 101: Hating Your Autistic Child. She wasn’t the first person to criticize—or at least question—what I write in this post. Easily, it’s the article that has received the most hostile comments of everything I’ve written online. It also has received the most compliments, the most Likes, the most shares, the most traffic of any autism-specific post I’ve written (some of my body/mind/spirit interviews have received more traffic over their lifetimes), and the most messages sent privately to me from people thanking me and saying how powerful and important this writing was for them personally. Just recently the article was requested and published by Autism Network Journal, an autism publication in India.
It’s fair to say that response to the post continues to be mixed.
Another friend more recently compared my site, derisively, to mommy bloggers who compromise their children’s identity and privacy for their own satisfaction. She then changed her mind.
But, still, I want to tease out these strands and address them.
First of all, mommy bloggers, and mommy blogs, aren’t all alike in the slightest—some are valuable, some just narcissistic and self-indulgent, some other things.
I suspect some of the content on my blog is valuable, some just narcissistic and self-indulgent, some other things, as well.
But, for me, the primary intentions of my writing are clear: with both the autism posts and the body/mind/spirit interviews, the intent is to educate and to help support people in their lives.
When I write about my son, Nicholas, he reads and approves the posts before they go online. He often selects the photos featured. If you ask him why I write about him on the blog, Nicholas doesn’t hesitate: “To help people,” he says.
Originally, indeed, the intent of the autism thread on the blog was to help humanize autism and promote autism acceptance.
More so, now, the intent is to advocate for neurodiversity—to promote a neurodiverse perspective and help foster kinder, more accepting, and more inclusive communities, schools, institutions, and even families to inform a society with a greater generosity of spirit toward autistics and other marginalized groups and, also, simply for everyone.
The pause I’ve been living in is a consequence of the huge divide in the autism community between most autistic adults and some families and professionals who embrace neurodiversity and the idea that autism is simply another way of being, diverse in itself and as valid as other ways of being and equal to them, and most parents and families of autistics and likely still most autism professionals. If they’re not seeking a cure for autism, and many still are even if they’ve polished their language around it, they certainly promote therapy and education goals intended essentially to exorcise the autism out of autistics, or at least to try to hide it very, very well.
Essential, urgent work needs be done to bridge these communities—to help them engage each other, foster dialogue, and question all of our perspectives. Otherwise, most autistic children being raised today will continue to fall into the expansive, confusing gap between these poles.
I believe that for autistic adults to participate, the foundational work needs to be spearheaded by an openhearted, nonjudgmental autistic adult or an organization of autistic adults.
So I recognize, increasingly, that I am not doing the bridge work I know must happen. Instead, even as a parent, I may just be contributing to an echo chamber of autistic adults and professionals, primarily, who advocate for neurodiversity. I find this reality frustrating, sometimes, and disappointing.
But I’ve been told by many autistic adults, and I’m coming to accept now, there’s a value in this writing nonetheless.
There’s a need and responsibility for strong voices advocating for neurodiversity to be coming from parents and family members. Sometimes, and this is awful, those voices will be better heard than those of autistics themselves.
There’s a need and responsibility for parents who embrace autism and autistics—who love autism—to declare it and to clearly affirm the value of autistic identity. Sometimes autistic adults and children, even those seemingly thriving, need to hear that message they may not have received, and still may not be receiving, from their own families.
There’s a need and responsibility for parents and family to proclaim and at least try to proselytize a perspective of acceptance and love of the autistic as autistic—because, if even parents and family can’t, what hope is there for the rest of society?—and to champion a population that too often is misunderstood and disrespected, bullied and victimized.