When TPGA republished my BlogHer essay Autistic Lives: Not Less Valuable, about the murders of George Hodgins and Daniel Corby at the hands of their parents, one commenter criticized my lack of understanding for the parents' mental states, writing, This was not just a mother not willing to be as strong as you.
That comment was a bifold WTF to me. It dismissed the point of my essay (the horrifying dichotomy in our society's perception of parents who murder their children: with disabled children, it's considered understandable because of caregiver stress; with non-disabled children, it's considered unforgivable). But that commenter was also making a huge assumption about me.
Because I'm not strong. I'm lucky. I have a great husband, great family support, Leo goes to a great public school, he has great respite --
and I belong to great, neurodiverse autism communities both offline and on. Those communities are generous in sharing their experiences and helping me learn to both understand Leo better, and be a better parent to him. They are strong. I am not.
I'm actually prone to depression, and have been in a serious funk for months. If you know me, you might have noticed -- I'm usually a 78 RPM girl, but right now I'm set to 33 RPM. You might not have noticed if you're only used to dealing with my awkward or brusque sides, because those haven't changed. Or you might not have noticed unless you're waiting on a deliverable that requires me to synthesize multiple moving parts. You might not notice because I can rally in person if you're not expecting much in the way of coherent thinking or speaking. Small talk? Coffee? Beer? Retweets, Facebook posts? Sure. I just can't process much that's non-linear at the moment.
Thing is -- and I want to be clear on this -- my depression has very little to do with being an autism parent. Some of it has to do with parenting, most has to do with not being able to fix very, very broken matters: divorce affecting people and children I love, or seeing the best people in the world wrestle with cancer. There's nothing I can do about the divorces and disease. 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.
Not being able to fix things fucks me up -- there's no non-NSFW way to describe it. That is why, when Leo was first diagnosed with autism in 2003, and media portrayals of autism were all horrorshows and head banging and soulless eyes and doom, I went into the deepest depression of my life. With horrible insomnia (I usually sleep like the dead), and occasional pulling my car over because the rules of the road would cease making sense. I was depressed because I thought my son was broken, and I didn't know how to fix him.
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 kid's rights. It's about unconditional love. And it's 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.
I don't want any autism parent to have to go through the new diagnosis depression grind I did; that is why Thinking Person's Guide to Autism came into being. But even the most fabulous autism book in the world can't magically fix everything for parents as long as our society continues to portray autism as The Worst Possible Thing That Could Happen To Your Child. There's still the initial shock to get over, accepting that this Worst Possible Thing could happen to you. And then, hopefully, the epiphany that autism is not The Worst Possible Thing, after all. That you're all going to be OK, and that you're not alone.
But even parents who ramp up quickly to accepting their child as autistic still need time to adjust. Anyone does, when they go through a significant reality rearrangement. Depression and anxiety are understandable during that transition. 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.
For me, the tragedy sets in when those parents -- through isolation, lack of support, or through communities that reinforce negativity -- continue to believe that autism is The Worst Possible Thing, are never allowed to consider the joy so many autistic children bring to
their families, never get to make contact with the many many
amazing autistic adults whose stories and very existence defy mainstream
negative autism stereotypes. I don't know what I'd do or where I'd be if Leo and I didn't both have supports and understanding and community. 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.
Anyhow. I'm now a veteran autism parent, and I'm lucky. I don't 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. I worry about what he 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.
It's not always easy.
Sometimes it sucks. Like right now, when Leo can't be in the same room
as his little sister, because he's in an aggressive phase, and she's a
shrieker. But you have to understand that my resulting, heart-cleaving sorrow over Leo's and Mali's standoff is no different than when Leo's sisters are locked in an
impenetrable yelling cycle. My sorrow 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
And then there's those other areas of unfixability. I will say that I have learned a lot this year, about realistic expectations, about the folly of projecting my own mindset and values onto others. Narcissists don't want to hear that their ongoing choices are profoundly disastrous and that the only role they currently hold in their extended family is that of emotional wrecking ball. If a sociopath gets off on manipulating people, then letting them know I'm angry at them is exactly what they crave. If a person who has been indulged and never held accountable int their entire life is still not able to fathom why other people don't just give them what they want, all the time, why is that a surprise to me? I guess I can't get over the way those scenarios are affecting the involved kids. Much the way I can't get over anyone ever thinking it would be understandable to murder an autistic child.
I'm going to be fine, I've waited out periods like this before. When my kids aren't trying to take each other out, they are my joy and solace, as is my husband. My friends and loved ones' cancer treatments have all been successful, so far, though they're not over. The divorce scenarios will either get better or they won't -- they're out of my hands, all I can do is support the parties involved however they'll let me, and give thanks for any positive steps. And I have my techniques for keeping my nose above water -- I do a crossword puzzle every morning to keep my brain from rotting out entirely; I listen to our local, reinstated classical music station in the car; I make myself checklists of tasks that result in physical manifestations of done-ness, and allow myself to attack them in phases if need be. It all helps.
I'm not strong. But I'll get by. Sometimes, that's all any parent can do.