The Four Chambers: Love, Life, Lust, and Loss, for Autistics Just Like Everyone Else

Butterfly, photo by Ray HemachandraI’ve been thinking a lot about joy lately, and especially about how the same experience or circumstance or day or week or year of your life, and perhaps the entirety of your life, can seem joyful or joyless depending on vision and context.

All the things we all talk about, maybe too often, come into play: framing, perspective, mindfulness, what love is, what in love is, what family and friendship are, support systems, and especially choice.

What does it require of us to accept our joy?

Why is it sometimes so hard? What do we lose?

Or what, if anything, do we lose by instead choosing and accepting something less, or at least different … or having such a choice made for us?

Sometimes losses save and free us. Sometimes they are lessons that build us up to reach greater heights of fully living. And sometimes they remain open wounds, bleak emptiness and want, or aching broken heart or head for all our lives.

I’ve experienced some parts of this; I am right now. Most people have, I think. We then commit to the idea of joy, still, even as life brings — and even as we often tether ourselves to, in spite of ourselves — loss and great pain. But although we too often fall short of the practice and experience of it, we still assert joy as a value.

“Choose joy” is simple and wise. It’s obvious. It’s necessary.

It’s not always easy. Not for everyone, anyway.

My son, Nicholas, is having what is likely an extraordinary all-star weekend. He started off at the Mountain State Fair with his primary support worker, Leigh Ann. Then, his respite worker, Jay, who is a Camp Royall counselor for the Autism Society of North Carolina, took him for the weekend to Camp Royall, which is south of Raleigh and Chapel Hill about four or so hours east, down out of these ancient mountains of western North Carolina. He’ll have a different counselor at camp — that is, not Jay — and it was exceptionally generous of her to make the offer to drive. (Otherwise I’d be having a Chapel Hill weekend right now — there are some good restaurants and I like campus, but still — or would have made roundtrips on Friday and Sunday. Car-pooling was the right choice all around.)

Nicholas turns 15 this month.

As he has aged, he still experiences joy, thank goodness. I bet this weekend has been especially joyful. But the truth is his capacity for joy has diminished, or at least the commonality of occurrence of joy has receded some for him.

That happens with most people as they move from childhood to adulthood, and to be sure his joy when it happens is still bright and beautiful and infectious.

Nicholas is autistic. He has a full co-diagnosis of OCD. For him, there are ways things are supposed to be.

I think this is true for all of us. It’s just that some people can at least sometimes and somewhat more easily move past what we intuitively know is supposed to be when it’s not happening, and move on, even if perhaps very grudgingly.

Flowers, photo by Ray HemachandraWe become Aesopian, trying to fool ourselves: this will be better, anyway; those grapes were sour, anyway.

And maybe sometimes they really were.

But sometimes, too, they likely were and are sweeter than any grapes we’ll ever taste.

So there’s loss. What we’re losing is unknown. A loss of possibility, potential, hope. A loss of joy.

And this writing is really focused on the love part, the in-love part, the being with part: beyond that, intersecting with it certainly and also residing outside of it, there is the pure sexuality and sexual desire that most people and most autistics have, as well.

When I think of romantic love in terms of my son, I try not to make stuff up about what the future holds for him. He surprises me, always, in so many ways, year after year. Still, it’s so important to him that things be as they should be. It’s so important to him that everything be right and manifestly so.

But things aren’t always “right.” I fall in love and don’t always get to be with the person I want to be with.

So does he. Nicholas is autistic and just as capable of love as most people are. (Maybe more capable: I honestly think he is made of love.)

Nicholas, too, already at his young age and stage of development as a teen, and not atypically so, has fallen in love and not really gotten to be with the person he wanted to be with.

That, of course, is really exactly right: two people get to make choices. They have to choose one another. But the result is sometimes not how he (and sometimes I and sometimes most people) perceive the way things ought to be.

How hard is that for him? I’m not sure. He feels it fully, no doubt. He doesn’t really understand it. Of course, mostly neither does anyone  — autistic, neurotypical, or anyone else — going through similar things.

Love is mysterious. Its loss or absence can be mysterious, as well.

We’re all in very much the same place sometimes. Choices are made, and answers are hard to come by, from the other and even from within ourselves. “Why?” isn’t often easily answered truthfully.

Like for other people, like for most people, love or its absence plays at and frays notions of self-identity and worth, but perhaps it does so a little more for Nicholas, who has certain vulnerabilities from his autism, speech deficits, Bell’s Palsy, OCD, school experiences, and other things.

Nicholas feels what’s missing. He feels joy and hope ending: he experiences their transitoriness. He feels the loss and absence of what was touched and felt on some level but never really had. The loss of innocence, I think, is profound.

Some of what we’ve learned about autism in recent years has been that autistics don’t feel less, traditional neurotypical perception and stereotyping notwithstanding. If anything, oftentimes they feel more. They feel with an intensity that overwhelms and needs to be accounted for and structured in ways that support social and practical functioning.

So, in an area in which really just about everyone can become overwhelmed and, yes, sometimes even struggle to function socially and practically, how best to help an autistic child or friend get through such a challenging and fundamentally human experience?

Just as we would best help anyone else in what we counsel, and just as we would best help ourselves:

Flowers, photo by Ray HemachandraWe strive to create and enrich a context and broader vision of love in relationships and in community.

We strengthen support networks and recommit to them, to friendships, family, activities, and structures.

And if we can come out of a lost relationship — even loss contained in feelings around and desire for a romantic relationship that didn’t happen — with a friendship, with a friend, all the better. That doesn’t always happen, and it shouldn’t always happen. But it sometimes does when people care about and for one another with generosity of perspective and an intention to support one another’s well-being and joy.

After all: we’ve all been there. And sometimes, maybe a lot of times, the friendship works out better anyway.

For what is true friendship other than joy?


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