Tuesday, October 27, 2015

When Parents Murder Disabled Children: What You Need To Know

Shannon Des Roches Rosa

"Stress is involved in almost every incident of serious child abuse, but it should not be seen as a mitigating factor more than any other source of stress should be seen as a mitigating factor. By and large, parents of people with disabilities are able to take care of their children without trying to kill them." -Samantha Crane

Whenever a news story breaks about a parent killing (or trying to murder) a disabled child, reactions to the story are almost as disturbing as the story itself -- because media and blog accounts tend to empathize with the parents, not the child victims. In fact the children in these cases are almost universally depicted as trigger for their parents' acts, rather than human beings with feelings, friends, interests, and rights.

We need to change those conversations.

Photo © Shannon Des Roches Rosa
[image: white teen boy with dark curly hair sitting on a bench
in a walk-through aquarium tunnel]
I want us to be more careful and compassionate when we talk about parents harming their disabled children. I want us to remember who the real victims are. And if we find ourselves empathizing with those parents, I want us to think long and hard about why.

If you identify with a murderer rather than a murder victim, or if you become upset when people criticize parents who hurt or kill their disabled kids, then maybe it's time to think about how you found yourself in that dangerous mind space and start making changes to help you, your child, and your family.

It may be that you come from outside the autism and disability communities, have only heard negative media messages about how difficult parenting a child with a disability can be, have never encountered people who believe in your child just as much as they want to support you. If this is the case, your attitude is not entirely your fault. But you can find and surround yourself and your child with community that matters—offline, and on—and with people who want the best for both of you.

It may be you reject the idea of accepting your child as disabled, because you believe that mindset means giving up or being in denial. You may assume parents like me, who constantly speak up about acceptance and understanding either have "easy" kids or are lying about what our lives are really like. But that's not what acceptance means at all, as explained by Real Social Skills:
"Acceptance creates abilities. Acceptance makes it easier to be happy and to make good decisions. But acceptance does not solve everything, and it does not come with an obligation to love absolutely every aspect of being disabled."
It may be you can't stop worrying about what will happen to your child after you die. But most children—disabled, autistic, or not—will and do outlive their parents. Try to reassure yourself by learning about "the different paths a child with special needs can take after graduating from high school," and investigating what your family's long-term special needs legal planning options actually are.

It may be you are participating in a community that, while providing catharsis and emotional connections you haven't found elsewhere, is actually toxic, actually fosters insidious attitudes about parenting children with disabilities. If the parents you rely on for emotional support consider such murder attempts "altruistic filicide," or justified due to desperation, then it's time to cut ties. It might feel like severing a limb, but you need to prioritize your safety and that of your child by finding parents who will help get you through trauma and crisis, but would not "understand" if you harmed your child.

It may be you don't have the services or support you and your child need; you may even feel like you're living in a minefield. This is a very real, not-rare situation, and it's not limited to parents who refuse to understand or accommodate their child's disability. People with disabilities who require intensive supports deserve sufficient resources, and so do their families. When these services are minimal or unavailable, that is a large-scale failure on our society's part. However, insufficient resources don't explain or justify murder of disabled children, because such crimes—which are also, frighteningly, not rare—do not actually have lack of services in common. So please don't spread the dangerous message that if parents don't get enough services, they might kill their autistic or disabled child.

Instead, parents -- like me, like you -- need to hear, and believe, that it's not a failure or shameful to ask for help, and we need to feel safe about doing so. For our own sake, of course, and also because reaching out protects our kids as well as ourselves. I'm pretty sure disabled people who survived harrowing, abusive childhoods would much rather have been raised by supported and supportive parents. That is one of the reasons so many autistic and disabled adults offer their insights online—they want our children to have better lives than they did. As long as parents are respectful, those adults can be a crucial part of your supportive community.

Parents also need to hear that when parenting is truly beyond their ability to handle, they always have options, even if those options break their hearts. They can, like two of my own friends have, place children in group homes. As I wrote on BlogHer:
"We need to stop assuming that putting a child into another's care equals giving up on that child. We need to stop declaring that when people relinquish their children, wholly or partially [...], it is because the parents are selfish. We should consider that these parents may be giving away the part of their soul that will always envelop that child for the child's sake, not to make the parents' lives easier."
And if a parent truly doesn't know where to turn, they need to know they can call emergency services, like those compiled by autistic writer and parent Paula Durbin-Westby. That call may result in separation between parent and child—maybe even a permanent separation—but who wouldn't prefer a parent and child alive but living separately by court order, over a murdered child?

It always comes back to finding the right community, finding friends who want to help you get through those days. And then the next one. And then the next. Many parents who feel this way are online, like Ariane Zurcher, who wrote about her relief in finding the support her family needed, and remembering her days of feeling alone and frightened:
"There is so much we are learning and still have to learn, but we are no longer alone. We are surrounded by other parents, professionals, educators and, most importantly, people who share our daughter’s neurology, those who are Autistic and who continue to share their experiences with us so that we might better parent our Autistic daughter."
Like Ariane, we need to learn to be careful where we look for help. We need to look to people who value our kids as much as we do—who will have both our and our kids' backs during desperate times.
I often share the We Are Like Your Child checklist for Identifying Sources of Aggression. It explains, from the perspective of people who share my own child's disability and neurology, the many, many, many reasons—from communication needs unmet to medical conditions to sensory overload—that may underlie otherwise inexplicable violence.

I think we parents also need to be extra-cautious in how much we reveal, publicly, about our children's difficulties, because we don't want to give people who neither love nor understand our kids ammunition for devaluing our children's lives, nor do we want to send the message that disabled children do not have the same right to privacy as their non-disabled peers. We need to help others understand our kids, of course, but from the perspective of telling the world that they are deserving human beings, rather than crosses for us to bear and commiserate over. We need to protect our kids at their most vulnerable and difficult times—even if those are times when are at our most vulnerable, too.

So find your positive, supportive people. They're out there, in safe public and private online groups, and on mailing lists. Once you're part of those groups, you can connect with people who can help you process and problem solve on a smaller scale, whether through texting, Skype chats, weekly private vent sessions, therapy, or in wiping tears off each other's faces before they fall into our coffee or beers. It's even okay to lurk in forums, if you're not comfortable talking with other people just yet. Just be careful about what you make public about your family, and who you listen to. And remember that your community is out there, you just need to locate it. Your people are waiting for you.

A version of this post originally appeared at BlogHer.com. I'd like to thank the autistic author of the blog Real Social Skills for helping me shape the original post.

Monday, October 5, 2015

NeuroTribes and the Proper Use of 'Neurodiversity'

Shannon Des Roches Rosa

Steve Silberman's NeuroTribes is a large, densely packed book about autism's past, present, and future. I found myself overwhelmed by the amount of information contained in each individual paragraph, in considering how much research and synthesis it took to create those paragraphs -- and in knowing that NeuroTribes's information matters so much, while acknowledging my kind of brain can't possibly retain it all. 

It doesn't surprise me, then, when other people have trouble remembering every important point in NeuroTribes, because the book is an 500-page information tsunami. Due to those info overload risks, however, some of NeuroTribes's themes need to be repeated more than once or twice for people to get them right. 

One theme that needs more emphasis is NeuroTribes' clarification about neurodiversity: The term is not limited to autistic people who communicate independently, or indeed only to autistic people. 

Neurodiversity is the full range of human neurological experiences. That means you, your loved ones, and every other person on this planet is included in neurodiversity. And that means the term 'neurodiversity' is not only not a synonym for Asperger's syndrome, it is also not a synonym for all diagnosis-worthy brain wirings, be they bipolar, ADHD, dyslexia, clinical depression, OCD -- or, you know, autism. 

A Neurodiversity Symbol
source: Wikimedia Commons
[image: a rainbow-hued infinity symbol]
When you're referring to brains that need support and accommodation, then you're talking about neurodivergence, not merely neurodiversity. If you're talking about your own, or another's, individual differently-wired brain, then the relevant term is neurodivergent. (Nick Walker wrote a go-to terminology briefing on neurodiversity and related terms, and I recommend it to anyone compelled to write on the topic.)

It follows that the opposite of neurodivergent, which is 'neurotypical' or 'NT', also includes more than non-autistic people -- even though NT is sometimes used as shorthand by authors with definitive writings on neurodiversity. 

And that means that if you mean 'non-autistic,' you should say "non-autistic," and not "neurotypical," or "NT." (Another word for non-autistic is 'allistic,' and people I respect have good reasons for using allistic instead of non-autistic, but I like Mel Baggs's explanation as to why non-autistic is preferable.)

People also tend to mistakenly conflate the term 'neurodiversity' and the term 'neurodiversity movement.' According to Nick Walker, "The Neurodiversity Movement is a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent." So when people get pissy and write things like "neurodiversity is evil," they are not merely letting their ignorance flags fly on more than one frequency, they are not only being hateful -- they are also flat-out incorrect. (Quixotic self-appointed neurodiversity foes will get their own article, later.)

Back to NeuroTribes: Silberman mentions that the neurodiversity movement includes more than autistic people at least twice, once in the development of the very term 'neurodiversity,' based on the dynamics of InLv, an early autistic culture mailing list:
"People with dyslexia, ADHD, dyscalculia, and myriad other conditions (christened 'Cousins' in the early days of ANI [Autism Network International]) were also welcome to join the list. The collective ethos of InLv, said writer and list member Harvey Blume in the New York Times in 1997, was 'neurological pluralism.' "
And again in the introduction:
"One of the most promising developments since the publication of [Silberman's 2001 Wired article] “The Geek Syndrome” has been the emergence of the concept of neurodiversity: the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture, rather than mere checklists of deficits and dysfunctions."
I am glad Mr. Silberman wrote those two passages. I am highlighting them in the hope that more 'cousins' witnessing the positive press swirling around NeuroTribes and the concept of neurodiversity will understand the neurodiversity movement includes them, even if they're not autistic.

As for using the proper terminology, well, that can take practice and, for some (ahem) the occasional refresher -- even for those to whom the terms personally apply. In most cases, if your obvious goal is to be welcoming and inclusive, and to highlight the needs of neurodivergent and autistic people and/or amplify such voices, folks usually will cut you slack. Unless the specifics of their own personality or neurodivergent nature requires them to address the misuse of terminology first and foremost. And that's OK, and to be expected, if we're truly working towards understanding and accepting neurodivergence and neurodiversity.