Let’s talk about autism, parenting, and victimhood. Specifically, how the constant negative media barrage about autism can affect parents of autistic kids, & when the dominant message is how awful it is to parent an autistic person like my son.

Thread time!

#Neurodiversity 1/

When stories about "loving parents" violate the most private moments of the autistic children in question, people are conditioned to see parents as victims and their autistic kids as unreachable and inhuman. This needs to stop. 2/

It's just that ... parents rarely write mainstream accounts of autism any other way than as horror shows. Plus autistic people who don’t, can’t, or aren’t enabled to tell their own stories are rarely portrayed as fully human. 3/

I'm not saying parents can't write about autism, or be honest about how we feel. But we have to always weigh what we say publicly against the potential long-term harm to both our autistic children and disabled people like them, and be vigilant in monitoring those boundaries. 4/

CN: Filicide

When I write about loving and accepting my autistic son, and especially when I decry (yet another, *sob*) filicide, I get criticized re: my lack of understanding for the parents' mental states, or scolded and told that not all parents are as “strong" as I am. 5/

But the thing is, I'm not strong. I'm *lucky*. I have a great husband, my son has a decent amount of state-funded respite, and I belong to supportive communities both offline and on. 6/

Those communities—parenting, disability, autistic, and overlapping—are generous in sharing their experiences, and helping me learn to both understand my autistic son better, and be a better parent to him. *They* are strong. *I* am not. 7/

I'm actually prone to depression, (though I'm on medication, and it helps, yay for meds that work). If you know me, you might have noticed—though if you're only used to dealing with my awkward or brusque sides, those haven't changed. 8/

Or you might not have noticed unless you're waiting on a deliverable, or need me to synthesize multiple moving parts. SORRY. I haven’t been able to write much, or publish much at @thinkingautism, in the past few months. Not happening. 9/

You might not notice that my mental health is not at peak because I can rally if you're not expecting much in the way of coherent thinking or speaking. Small talk? Retweets? Sure. But I can't process much that's non-linear at the moment. (So, this thread is a hybrid repost). 10/

Thing is—and I want to be clear on this—my depression has *very little* to do with being a parent of a high-support autistic teenager.

11/

Some of my depression has to do with parenting in general—teens are hard!—but most has to do with not being able to fix matters over which I have no control, like preventable pandemic deaths, lockdown restrictions plus missing family/friends, and global political hellscapes. 12/

And I'm a fixer, a doer. Helping, fixing, signing off, pressing "send," checking that box and moving on to the next task is what keeps me fulfilled and happy. Feeling powerless and adrift undermines my happiness. 13/

[thread to resume later, parenting calls] 14/

Not being able to fix things f***s me up—there's no non-NSFW way to describe it. That is why, when my son was first diagnosed with autism, & all I’d ever heard about autism was horror shows & head-banging & soulless eyes & doom, I went into the deepest depression of my life. 15/

I had horrible insomnia (I used to sleep like the dead), and occasionally would pull my car to the curb, because the rules of the road had stopped making sense.

I was depressed because I had been convinced my autistic son was broken, and I didn't know how to "fix" him. 16/

And it took years, but I eventually realized that parenting is not about fixing. It's about supporting, accepting, finding best practices, and fighting for your kids' rights. Parenting is about unconditional love.

17/

Parenting is about putting your kids first. About making other people see your kids—and kids like them—the way you do, the way every kid deserves. About accepting the changes kids bring to your life, even if they weren't what you expected. 18/

I don't want any parent to have to go through the new autism diagnosis depression grind like I did, and I want their kids to be spared that experience too. And that is part of why I co-created Thinking Person's Guide to Autism, @thinkingautism. 19/

But even a fabulous autism resource can't magically fix everything for parents, not as long as our society continues to portray autism as The Worst Possible Thing That Could Happen.

Parents need to hear that there are ways to make things better, and that they are not alone. 20/

But even parents who quickly accept their child as autistic need time to adjust. Anyone does, when they go through a significant reality rearrangement, especially one in which one’s child is socially stigmatized. Depression & anxiety are understandable during that transition 21/

And anyone who is depressed deserves help. The need to get help is all the more critical when the depressed person is a parent or caregiver of a disabled child with significant support needs. 22/

So it is tragic when parents like me—through isolation, lack of support, or through communities that reinforce negativity—continue to believe that autism is The Worst Possible Thing, never learn how to support their kids properly through crises or with communication aids… 23/

…it is tragic when parents never witness or appreciate their autistic children as their own authentic selves, and never get to make contact with the many many amazing autistic adults whose stories and very existence defy mainstream negative autism stereotypes. 24/

I don't know what I'd do or where I'd be if my son and I didn't have supports and understanding and community. I don’t know where we’d be.

And I worry, a lot, about the children and families who don't have what we have. That is why I do the work I do. 25/

Anyhow. It's been more than a decade since my son's autism diagnosis. I no longer worry over autism as a nasty boogeyman that I can't fix, or could fix if I tried hard enough (a quixotic and demeaning approach at best). I worry about my beautiful son, who is autistic. 26/

I worry about what my autistic son needs from me, and whether I'm a good enough parent, a strong enough person to provide it.

Mostly I just do my best to support him. 27/

It's not always easy. Sometimes it sucks, like when my kids brawl. But please understand: the resulting, heart-cleaving sorrow of my son & one of his siblings having a standoff is no different than how I feel when his two siblings get locked in an impenetrable yelling cycle. 28/

My pain comes from the helplessness of not being able to instantly make everything better for my children, these three people who were ripped from my soul and whose unhappiness has the power to destroy that soul entirely. 29/

I'm going to be fine, I think. I've waited out depression (though not pandemic f***kery) before. When my kids aren't trying to take each other out, they are my joy and my solace, as is my husband. I have my techniques for keeping my nose above water (booooks!). It all helps. 30/

I'm not strong. But I'll get by. Sometimes, that's all any parent can do. And finding the right parenting and autism and disability tools and resources to get by—that has made all the difference.

Please take care of yourselves. xo

31/31