Journal entry #2 - caregiver study

just gonna keep trying to put into words how my child saved my life until people really and truly start to hear me

long legs, pen and gouache on watercolor paper - bad_french

How has autism influenced your life? How have you been changed by this caregiving experience?

This is perhaps the question I've been trying to share the answer to for the last 3-4 years. If I could easily distill how autism has influenced my life, I'd finally be ready to write the book I hope to someday write.

Autism is an explanation for the immense struggles I experienced as a highly intelligent and extremely socially insecure person for the first 35ish years of my life. It is an answer to the question mark that hovered just over and behind my head, the constant "am I doing this right?" that nagged at every moment in the presence of others, and often for hours before and/or afterwards.

Coming to know myself and my child as autistic individuals has meant coming to know myself at all; it has meant moving back into my physical body after a lifetime of persistent, mild to moderate dissociation. And the influence of autism on my life is inextricably tied to my experience of caregiving. Before I knew - before we knew how to understand ourselves, how to move through the world authentically and without persistent threat activation and fear - there was no access to thriving. We had no access, we had no language to story ourselves generously, we had no pathways for compassion for ourselves or for one another. And in carrying out the day-to-day patterns of modern American parenting - just like everyone else around me - I was, however much I intended the opposite, bringing great harm to my child. Processing and accepting that alone took immense time and space. For example, when I realized how traumatizing the culture around food in our home had become for my child, I didn't cook for a whole year. I couldn't cook for a whole year. I had been "sticking to my guns" and "Mother knows best"ing us into deep burnout, and realizing that was indescribably painful and difficult. But I needed to feel and know and be with that difficult for as long as I needed to, so that I could shift into something new and more attuned to our needs when I was ready.

These days I'm back to cooking, and I cook more than ever before! I love the sensory experience of cutting and cooking vegetables, of the living pillow of a high-hydration sourdough bread during proofing, of feeding my family with my hands and my joy. And as we have healed together, my child's suspicion of nearly all foods has started, ever so slowly, to melt away. Yesterday, he ate 1 blue edible flower from a borage plant that I described as "like a sweet cucumber" - I write this with baffled amazement because if you knew where we were 4 years ago, 2 years ago, 6 months ago, as relates to food, you too would be baffled and amazed. And literally all he ever needed was autonomy, trust, and time. Just unconditional love, trust, and acceptance.

I look at my child each day and feel immense and glittering gratitude for what he has given me and what we now get to experience together. And I want to be clear about this, I hear people say not to speak only to that which is good of autistic experience - and their reasons are well justified! We aren't superheroes to be valorized, we'd really like just to be seen and known as the human beings we are, no more, no less. But my experience of autism has been the complicated and messy experience of transformation, of self-acceptance, of finding what I knew was there all along: deep, unbounded, and truly unconditional compassion. And that is really beautiful and so to me, autism is really good and really beautiful.

I think people feel the need to cling to their notions of autistic people as somehow less than/worthy of pity/etc. because if they didn't, they'd have a lot of painful work to do within themselves, and people mostly aren't going to do that work unless they have to. I know I wouldn't have.

Autism - through my child, through myself, through the broader culture - has quite literally saved my life and provided a navigable pathway towards self-acceptance and thriving, things I never even thought to hope I might find and trust to stick around. And I trust it so easily these days.

In summary! Without my experience of caregiving, I'd be at best, still quite painfully lost, and at worst, probably dead.

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I’m doing a good job. You’re doing a good job.

-bad_french