Thursday, March 2, 2017

Untwisting Perceptions: Autism, Parenting, and Victimhood

Shannon Des Roches Rosa
www.squidalicious.com

Content note: this article discusses murder, disability, and mental health.

There is a horrifyingly typical coupling of devotion with murder, whenever disabled people are the victims. A recent example is Ruby Knox, an autistic young woman, who was murdered by her mother Donella, in Blenheim, New Zealand. Donella drugged Ruby, then suffocated her. Both the reporting and the judge on the case portray Donella as a "loving mum who was driven to kill her daughter."

I'm here to say: Fuck that.

I need you -- and judges and reporters everywhere -- to understand that, however difficult it may be for families to support their disabled loved ones, murder is never excusable. There are always other options. Always.

That last message is especially important when you consider that disability-related filicides like Ruby's are more common than the occasional high-profile story might have one suppose -- according to Julia Bascom of the Autistic Self Advocacy Network, the average rate for these murders is One. Each. Week.

Another reason these killings always knock me off my feet: reporters' descriptions of victims like Ruby are so similar to how my own son Leo has been perceived by some journalists, and even some acquaintances. And because Leo needs (and deserves) full-time support, my husband and I are automatically considered good, selfless people.

This is what keeps me up at night: Would people really sympathize with me if I hurt my son? Could they really justify the loss our wonderful Leo -- who depends on, loves, and trusts us whole-heartedly, and whom we love right back; who is as capable of being as sneaky and defiant as any teenage boy, but who lacks malice almost entirely -- because he was born with autism and a communication disability? Would they write off his murder as a burden being lifted?

I blame the tendency of such twisted dismissals of the value of autistic lives like Leo's on the constant negative media barrage about autism, especially the recurring theme of how awful it is to be an parent of an autistic kid like my son. When stories about "loving parents" violate the most private moments of the autistic children in question, as does the recent New York Times Modern Love podcast For The Boy Who Makes Waves, listeners are further conditioned to see parents as victims and their kids as unreachable and inhuman -- even though dehumanizing his son was probably the last thing author Joe Blair intended. It's just that ... parents rarely write mainstream accounts of autism any other way. And autistic people who don't tell their own stories are rarely portrayed as fully human.

I'm not saying parents like me, or like Blair, can't write about parenting, or that we can't 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 children and disabled people like them, and be vigilant in monitoring those boundaries.

With that in mind, I'd like to revisit an essay I wrote five years ago, on autism, parenting, and victimhood.

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CalTrain + green straws = Leo joy!
[image: A happy white teen dude with curly
brown hair, riding a train with his mom.]
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 non-public school, he has great respite -- and I belong to supportive 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 a very long time (though now I'm finally on medication, and it helps). If you know me, though, 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, or need 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 a parent of a high-support autistic teenager. Some of it has to do with parenting in general being an overwhelming job, most has to do with not being able to fix broken matters over which I have no control. 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 horror shows and head-banging and soulless eyes and doom, I went into the deepest depression of my life. With horrible insomnia (I used to sleep like the dead), and occasional pulling my car to the curb, because the rules of the road had stopped 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 kids' 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 parent to have to go through the new autism diagnosis depression grind I did; that is part of why I co-created Thinking Person's Guide to Autism. 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 To Your Child. There's still the initial shock to get over. 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 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, never witness or appreciate their autistic children as their own authentic selves, 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. It's been more than a decade since Leo'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. 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 when my kids brawl. But you have to understand that the resulting, heart-cleaving sorrow of Leo and one of his sisters having a standoff is not that different than that of Leo's sisters being locked in an impenetrable yelling cycle. 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.

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 my solace, as is my husband. I have my techniques for keeping my nose above water -- I do a crossword puzzle every day to keep my brain from rotting out entirely; I make time for books and podcasts that keep me learning; I make 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. And finding the right tools and resources to get by -- that has made all the difference.

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Resources:

Autism Memorial (autism-memorial.livejournal.com) "is dedicated to remembering those autistic people who died because of malpractice, lack of resources or support, or outright murder. Occasionally, a news story will be widely covered, but most cases receive very little memorial. Even when an autistic person is murdered by a family member and it becomes a big news story, the autistic person often becomes lost amidst sympathy for the murderer. This site is here because everyone should be valued, and everyone should be remembered."

The Disability Day of Mourning website (disability-memorial.org) "is a memorial to the people with disabilities who were victims of filicide. Active cataloging of cases started in mid-2014; this site contains cases from 1980 to the present."

The Autistic Self-Advocacy Network's Anti-Filicide Toolkit (http://autisticadvocacy.org/home/projects/disability-community-day-of-mourning/anti-filicide/) "This toolkit is intended to provide advocates and allies with concrete tools and resources to use in their own communities, including in response to local incidents. The toolkit includes information about how to understand and respond to filicide, frequently asked questions about filicide, and a guidebook for Day of Mourning vigil site coordinators."

The Ruderman White Paper: Media Coverage on the Murder of People With Disabilities by Their Caregivers (www.rudermanfoundation.org/blog/article/the-ruderman-white-paper-media-coverage-of-the-murder-of-people-with-disabilities-by-their-caregivers) "Approximately once a week, a person with a disability is murdered by a family member or caregiver. We have found that when these murders are covered, they are often called “mercy killings” which perpetuates the stigma and myth that the life of a person with a disability is not worth living and that it is a kind deed to end such a life. Such coverage simply must stop. It is dehumanizing and dangerously continues to stigmatize disability. We’ve found that the voices of the victims are nearly always erased to favor the perspectives of the perpetrators. This too must stop. In this White Paper, we offer insight into a difficult phenomenon and offer resources and best practices to stop the stigmatization of disability."