All your sorrows have been wasted on you if you have not yet learned how to be wretched.
– Seneca
I just finished a binge of Netflix’s Love on the Spectrum, and the series was everything it was recommended to be: heartfelt, honest, and sweet. There was the added bonus that it was filmed in Australia, where we’ve lived for three and a half years, which means I recognized names and scenery as a local (always fun!). Other than that? Let’s just say it’s complicated.
I don’t remember the last time I engaged so intensely with a series on both an emotional and physical level. In a word, my viewing of the quartet of episodes was fraught: every muscle in my body felt clenched, my face contorted, my heart spasming. This was due in part to my own connection with the spectrum, and the fears the series raised about my son’s future.
I’ve shared this before, but my older son was given an autism spectrum diagnosis at age 3 (over five years ago). James has come so far, conquering speechlessness, occupational therapy, and ABA/school shadow therapy. We are in a relative season of triumph right now, with so many of the limitations from the beginning of this road now discarded and left in his wake. But LOTS introduced new things to worry about as James gets older, and I’ll be damned if I didn’t walk around with a fear-sized chip on my shoulder as I allowed these worries to plague me.
Then I remembered something vital: James’s story. His ability to surprise us and surpass his challenges at every turn. And, above all, the enduring faithfulness of a God who holds my boy’s future in his hands. So as those clouds cleared but my unease didn’t, I came to realize that the gritted teeth and balled fists accompanying my viewing of the series were the telltale signs of my defenses being raised. So much of my watching, and reaction to, LOTS is tied to how I want people to see the spectrum — and, in particular, my son.
When I was a pediatric dental resident, I completed a research paper on autism and its behavioral and dental implications. I remember reading journal articles and thinking, Thank God that’s not me. And I wondered, as I watched LOTS, how many viewers had that same thought: their warm awww‘s possibly paired with a nonverbal thank God that isn’t us.
When it comes to being a voyeur — a common role in this reality TV/social media-inundated world — we can reject identification with what’s onscreen, or embrace it. We may refuse to see ourselves as the relapsing alcoholic or the fumbling dater or the conniving strategist. We may watch for the comfort of the division between us and them. Identifying with the wounded would ruin our escapism, so we practice social distancing from the truth by calling it not me. Or we find relatability with onscreen personas. Maybe our illusions have been shattered, and we have no other choice but to see that we’re all struggling in one way or another. We have been brought by brokenness to the truth about ourselves — the good, the bad, the ugly, and the wretched — and it is here that we encounter love.
Like all of us, James was made intentionally and wonderfully. And like all of us, his life has held its share of heartbreaking moments. That is part of the truth about him, and so is this: he is deeply empathetic (my good friend tells me that James is the only kid she knows — including her own — who regularly asks her how her day was). He has an incredible sense of humor. When we received his diagnosis, I wondered if I’d ever be able to communicate with him in my personal love language. Cut to our family of four walking back home from the park yesterday and James saying to my husband, “Thanks a lot, Dad,” then looking at me and adding, “that was sarcasm.” God is good, y’all. All the time.
Rainer Maria Rilke once wrote,
I am learning to see. I don’t know why it is, but everything enters me more deeply and doesn’t stop where it once used to. I have an interior that I never knew of. Everything passes into it now. I don’t know what happens there.
Since becoming a parent of a kid who learns differently — since becoming a parent — hell, since becoming myself through therapy and grace — I have found this interior, this place of depth and mystery also described by Anaïs Nin when she wrote, “The real wonders of life lie in the depths. Exploring the depths for truths is the real wonder which the child and the artist know: magic and power lie in truth.” Love on the spectrum — which I know as my love for my son, and God’s love for us both — has primed me for grace.
I have never been closer to understanding how emotion can run so deep that one could sweat blood. I have felt triumph higher and sadness lower than I knew existed. I have entered relationships marked not by convenience and agreement but by tears and honesty. I have discovered a love — within myself, and for me — forged by grace, and more durable than any I ever knew before. A love that is echoed by the parents I saw on LOTS, whose illusions have been shattered, who are raising not the kids they wished they had but the ones they have. Living not the life they planned but the one in front of them: full of pain, and joy, and everything on the spectrum. A life we can all have when we don’t distance ourselves from truth.
I don’t know what James’s future looks like any more than any parent knows their child’s. But I’m pretty fond of this description:
No eye has seen,
and no human mind has imagined
what God has prepared for those who love him.
COMMENTS
4 responses to “All the Lies I’ve Believed about the Spectrum (and the Truth)”
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Damn what a piece of writing. thank you Stephanie for “going there”.
I, too, couldn’t stop thinking about the parents when I watched this show: how desperately they loved their kids and how hard-won that love must have been. Thanks for this lovely piece of writing! I needed to hear it today.
Deb and I are both ASD teachers. My kiddos are all HS age. If you have never taught sex-ed to autustic kids you are missing out on one of lifes greatest experiences. This show had us as soon as Michael referred himself as a “double scoop of dog shit”. What a great series.
And Brodie and Chloe . . . OMG