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What’s Out There?

  • Posted on July 30, 2014 at 10:00 AM

Parents worry a lot about what it will be like when our children go out there, out into the world. For some, worries revolve around the violence and crime that permeates our world. For no reason, for no reason at all, a car could slam into a child and take that child from this world. Does it really matter if the road was slippery due to rain or snow? Does it really matter if the driver was tired or drunk? Does it really matter if the driver was in a get-away-car or going for a joy ride? What matters is that the child is gone and there’s no reason for it.

For some, worries revolve around society and the judgments society makes about individuals. For no reason, for no reason at all, a child can be harassed or bullied or killed. Does it really matter if the child is gay or straight? Does it matter if the child is typically developing or developmentally delayed? Does it matter if the child is autistic or crippled or seemingly normal? Does it matter if the child is black or white? What matters is that the child is hurt, scarred, or gone and there’s no reason for it.

For some, worries revolve around the child. For no reason, for no reason at all, a child can be sick or dying. Does it really matter if it’s leukemia or AIDS? Does it really matter if it’s epilepsy or traumatic brain injury? Does it matter if the disease is rare or common? Does it matter if it’s acquired or if the child was simply born that way? Does it matter if the life expectancy is a month or a year? What matters is that a child is hurting, growing weaker, slipping away, and then gone and there’s no reason for it.

I look out into the world and sometimes what I see terrifies me. I don’t want to go out there. I don’t want my children to go out there. And I honestly just don’t get it. There’s enough pain and suffering in this world that we can do absolutely nothing about! Why in the world would anyone want to bring more pain and suffering onto others by committing crimes, acts of violence, or acts of negligence?

I realize, logically, that these people aren’t thinking about other people. The man who drinks himself stupid and then gets behind the wheel isn’t thinking about the people he might hit along the way. He’s drowning some sorrow in booze and then thinking, if you can call it that, about getting home. The man who holds up the convenience store isn’t thinking about the people he’s robbing or the people he might hurt or kill in the process. He’s thinking about what he wants and the quickest way to get it. The kid who bullies another isn’t thinking about that other kid. He’s thinking about his own pain, his own inadequacies, his own need to feel better, superior, cooler, or whatever.

I think about other people. I think about my family, my friends, my neighbors, and the strangers that are around me. I look before I backup. I drive carefully and soberly. I don’t drive when I’m impaired. I’m cautious, careful, hardworking, and loving. In a moment, my world could be changed by someone who isn’t like me. In a moment, my child or my husband or I could be gone from this world. And so I worry. I try not to think about it, but I worry nonetheless.

Sometimes I wonder why parents like me, parents of children with autism, try so hard to get their children out there, out into the world. Sometimes I think we’d all be safer if we just stayed home whenever possible. Go to work, go to the store, go out to eat upon occasion, but stay home and stay safe as much as possible. But even that kind of safety is an illusion. What’s out there can come in here without warning.

What We Want

  • Posted on August 16, 2013 at 10:00 AM

If you’re even marginally involved in the greater autism community, then you probably know that our community is as polarized as American politics. We tend to get so caught up in the how that we fail to see that, when it comes right down to it, most of us want the same things.

We want people with autism—both as children and as adults—to be able to live happy, healthy, fulfilling lives.

If you recognize this similarity, if you agree that this is the real goal of everything you do, then why not reach across the aisle and cooperate with others who want the same thing?

We can work together. We can achieve our common goals. We can find ways to compromise so that we can share a vision of the reality we seek.

We can, because we have to. If we don’t, we’ll fail.

It’s as simple as that.

False Blame

  • Posted on July 31, 2011 at 5:16 AM

This post is in response to Rachel’s recent post at Journeys With Autism about taking care when expressing our experiences of disability. Her post was, in turn, a response to another blogger.

While I’m not going to try to touch on everything Rachel covered (It’s a good post, and I highly recommend you check it out.) there’s a particular passage that got me thinking about an issue that’s been a concern of mine for a long time.

It all started with this:

My concerns on this score only increase when Ms. Baird launches into some of the most fear-inducing words about autism that I have ever read:

Autism is where marriages and parenting partnerships come to die on the rocks of exhaustion, despair and blind self-interest. Autism wears down families, severs familial bonds with sharp and bitter recriminations, blame and guilt.

I absolutely cannot tolerate it when people indulge in these kinds of generalizations about a condition that exists on a very, very wide spectrum. I understand and have compassion for Ms. Baird’s experience, but it is her experience. Yes, it is an experience shared by other families, but it is by no means the universal experience of autism.

I highly recommend reading Rachel’s post, because she makes some very important points that are specific to autism, and apply more generally to discourse on disabilities. However, in this post, I would like to address this from a perspective beyond autism and beyond disability. Simply put, what Ms. Baird is experiencing within the context of the quoted passage has nothing to do, specifically, with autism.

For those immersed in the world of parenting an autistic child, this may seem counterintuitive. After all, those of us with autistic children, especially children with “severe” autism, know it’s almost always challenging, often exhausting, and very, very stressful. But that’s just it. It’s not autism that wears down families, severs familial bonds, or creates blame and guilt. It’s stress. More specifically, it’s our poor or inadequate reactions to stress that have these consequences.

Stop and think about it for a moment. If autism were the cause, then we’d only be seeing these effects in families with autism. But that’s not the case. Nor is it the case that we only see these effects in families with disabled children. No. We see these effects in families that are impacted by a wide variety of stressors, and currently one of the most notable stressors is finances. How many parents have killed their children or their whole families in reaction to financial crises? I don’t know about you, but I’ve lost count. How many more succumb to abusive behaviors? How many people have walked away from their marriages and their children because they lost their jobs, because they couldn’t pay their bills, because they were going to lose their home? Is anyone even counting?

Sure, some families with autistic children experience exactly what Ms. Baird described. But so do families with no autistic children. Autism is not the cause. We have a tendency, as parents of children with autism, to falsely blame autism for our struggles and our challenges. We blame autism for experiences that we think are, at least to some degree, exclusive to ourselves and our “kind,” because we get so caught up in autism that we fail to see our similarities to others outside of ourselves.

People can, and frequently do, react badly to stress. These reactions are to stress, or the experience of being stressed. The cause of that stress is, for the most part, irrelevant when the issue is our reactions to that stress. There are many causes, and there are many reactions; but the causes do NOT dictate the reactions.

What is the difference between the mother who kills her child because her child is autistic and the father who kills his child because he’s broke? Certainly the first evokes great concerns about the perception of autism and disability in this country; certainly the later evokes great concerns about the psychological effects of our economic downturn. But, despite these differences, both are tragedies; both involve the deaths of innocent children at the hands of their stressed-out parents; both are bad reactions to stress.

I’m not a psychologist, a sociologist or an anthropologist. I cannot tell you how different or unusual this reaction is from reactions to stress over hundreds or thousands of years of human society. I’m just a mom. I’m a mom who looks at my kids and is horrified at the thought of a parent willfully killing their own children. It’s outrageous. It’s horrifying. And it’s happening. It’s not just happening to autistic kids. It’s not just happening to kids that are disabled or sick. The phenomenon is bigger than a single stressor. It’s bigger than autism. It’s bigger than disability. I see this and I can’t help but think that something has gone very, very wrong. For all I know this has always happened. I don’t know. But, even if this is some sort of incomprehensible “normal,” it’s wrong. It’s just wrong.

When I brought this up in a briefer form on Rachel’s post, she evoked the word “support.” For those of us within the autism community, support is a major buzzword. It’s a major buzzword in the greater disability community as well. My question is this: why isn’t support a major buzzword in the community at large? The concept of support is not exclusive to disability. We all need support. We all need community support; in fact, that’s the reason why communities exist.

Families disintegrate due to stress, or rather due to poor reactions to stress. The nature of the stress is not what needs to be fixed. There are too many stressors in the world to fix them all. If it wasn’t autism, it could be poor finances; if it wasn’t finances, it could be something else. The cause of the stressor isn’t the problem. The problem is how we respond to the stress. If people get the support they need, I believe responses would improve—again, I’m neither a sociologist nor a psychologist, so my statement is intuitive not factual. My point is that blaming the stressor does not get you the support you need. You cannot choose whether or not your child has autism. You cannot choose whether or not you’re laid off. You can choose how you respond. You can choose to let your family disintegrate. You can choose to take them out with a shotgun. You can also choose to cope, to get support, to reach out, to build community, to help and be helped.

That choice has nothing to do with autism. You can lay the blame for all your woes at autism’s anthropomorphized feet if you’d like, but it won’t do you or anyone else any good. How you deal with the stressors in your life is your choice and your responsibility. Choose wisely.

Independence: Conclusion

  • Posted on July 27, 2011 at 3:55 AM

I began considering what independence means around Independence Day here in the US. I considered how misguided I found our cultural obsession with independence to be, and then posted about what independence looks like for my family. Now comes the final question: What will independence look like for each of my children once they become adults?

Honestly, I’m not sure the answer matters. For one, it’s too early to predict. Based on their current developmental trajectories, Willy is likely to be a quirky, but reasonably independent adult; Alex is likely to more dependent on others for personal care needs; and Ben is somewhere in-between, as he usually is.

But what does it matter? I’m much more interested in knowing who they will be than I am in knowing how independent they will be. The more I think about it and consider the misguided ways we prioritize independent self-sufficiency, the more deluded I think it is.

We all need each other. Some need more tangible, quantifiable help than others, but we all need each other. Society and culture, as a necessity, don’t function without each of us. We all contribute. We’re all in this together. And the more of us there are who are willing to admit it and help each other in the ways that we can, the happier we all will have the potential to be.

And that’s what I hope for my children: to be happy being themselves.