The following comment was highlighted earlier this week by the editors at Age of Autism. Editor Dan Olmstead explained that “This new comment, by Lost and Afraid, captures the desperate reality of autism for so many even as we keep hearing about the small proportion with higher functioning lives … suicide, violence, family stress, profound disability. What fun. “
I have a 16-year-old brother-in-law with severe autism, and he gets very violent on almost a daily basis. I didn’t have any experience with autism before him, and my wife and mother-in-law seem to forget this, as now I’m not even allowed to say anything to him when he’s doing something wrong. I’ve been accused of being at fault for his outbursts of violence, and I’ve been threatened by members of my wife’s family with physical violence if they hear about me treating him that way again.
His father took his own life last year, and since then it’s gotten worse and worse. Now this kid who can’t even communicate that he has to go to the bathroom until he’s shit his pants, has this huge emotional trauma to deal with. And since his mother had to go to work to provide for the family, my wife got stuck watching him almost every day, so now I have this violent person in my home at least four or five days a week. I fear for the safety of my one-year-old daughter, who he has already hit once before (and I got blamed for that incident). There are no resources for people in my position. I’ve tried doing research online about the link between autism and violence, and how to deal with it.
Everything I’ve found is useless.
Some of the articles sugar-coat the problem by coming out with statistics about how violence is only present in 3% of autistics. Well, that’s fantastic for the other 97%, but what am I supposed to do the next time I get head-butted in the chest because I won’t let him run out of my apartment before everyone else is ready to go? The rest of the articles I’ve found are terrifying, like the story of Trudy Steurnagel, who was beaten to death by her autistic son. I don’t know what to do.
My wife and mother-in-law think that he’ll come out of the autism to a degree, but I don’t see it.
They’re basing this hope on my sister-in-law coming out of her shell to a degree, but she only has Aspberger’s (sic) and not full-blown autism. On top of that, in the eight years I’ve known him I’ve only ever seen him get worse. It has me wondering what would have to happen before they finally admit he’s dangerous.
Does someone have to get seriously injured in one of his attacks? I’m trying not to resent him, but it’s becoming increasingly difficult. His violent behavior towards everyone around him has me afraid for my daughter’s safety. Because my wife is stuck watching him constantly, she can’t get a job, and we’re struggling financially. Any time I try to talk to her about the situation, I’m either met with hostility or silence.
As I’ve said before, I think it’s vital to acknowledge and address the fact that for many families, violent outbursts are indeed a part of every day life. I’ve written that I have friends who, despite every possible effort to understand, communicate with and accommodate their autistic children, have had to train their other children in non-violent self-defense. I’ve talked about the fact that they have described their homes and their lives during those periods as war zones where they felt that they were under siege. I’ve talked about the fact that it’s one of the most difficult things to talk about, because publicly portraying one’s own child as violent, particularly online, where what we write never, ever goes away, can haunt him into adulthood, compromising him even after the issues that had once made him violent have long-since been resolved.
So it is absolutely true that it’s extremely challenging to find resources on autism and violence online. Because a lot of the stories stay hidden to protect the autistic people involved. And even though that is as it should be, it makes it hard for those seeking help. It can and often does make caregivers feel isolated and alone. It convinces them that they are the only ones who face the particular struggles that they do. And, at times, it makes the happy, shiny stories awfully hard to swallow without resentment.
I don’t know what the answer is. Perhaps it’s sharing anonymously. Telling stories without exposing identities. Because I know, I really, really, personally, intimately know that there are good people out there, who are doing everything in their power to parent with love and respect, whose children still lash out in seemingly inexplicable bouts of violence. And I know how scarce real-life help is for those in crisis. And I know how devastating it can be to be turned away or bounced around a broken system that makes it nearly impossible to get the services they so desperately need.
I don’t know anything about the situation described by the commenter. I don’t know him, his brother-in-law or anyone in the family. All I have to go on are his words. Which I’ve scoured for hints of compassion. I’ve looked in every nook and cranny in hopes of finding something, anything, that would give the impression that the writer was trying to look at the world from this young man’s point of view, to understand WHY he was hurting enough to be violent.
The closest I can come is “Now this kid who can’t even communicate that he has to go to the bathroom until he’s shit his pants, has this huge emotional trauma to deal with. “
I guess that’s something.
But it’s immediately followed by, “And since his mother had to go to work to provide for the family, my wife got stuck watching him almost every day …”
“… stuck watching him …”
Twice in the space of a five paragraph-long comment, the writer refers to his wife being “stuck with” caring for her brother.
Let me ask you, if you had to go somewhere every day where the overwhelming feeling about your presence were resentment, how would you feel? And if you didn’t have the means to communicate whatever that feeling was, or what you needed from those around you, what might ultimately happen in that place?
In the opening paragraph of the comment, the writer says, “… now I’m not even allowed to say anything to him when he’s doing something wrong. I’ve been accused of being at fault for his outbursts of violence, and I’ve been threatened by members of my wife’s family with physical violence if they hear about me treating him that way again.”
Is autism the most pressing problem here?
Autism is, first and foremost, a communication disorder. To varying degrees, it makes communicating ones inner world anywhere from mildly challenging to seemingly impossible. And that’s frustrating as all living hell. In fact, it can BE a living hell. For many, there simply is not yet a way to make themselves understood to those around them.
And what happens when you can’t make yourself heard? What happens when you are frightened? What happens when you feel threatened? What happens when your body takes over and slips into fight or flight and as the adrenaline surges through your system there is not a god damned thing that you can do to tell someone what you need to make it stop?
Violent outbursts happen.
And sometimes, no matter how much we try to change the environment, to remove the stressors, to accommodate those whom we love with everything we’ve got, we can’t stave off the frustration or the pain or the overstimulation that leads to violence. It’s real; it’s scary and it’s effects, especially on siblings, can be heartbreaking.
There is a note from the managing editor on the site calling upon autistic advocates to offer “useful insight as to how to prevent the situation from escalating.” While I’m not an autistic advocate, I spend a lot of my time listening to them, getting to know them, processing and implementing their advice, and, quite frankly, trying to emulate them. And my immediate advice to the commenter, based only on his own description of the situation, is this ..
Examine your own behavior. Listen when those who know your brother-in-law well tell you that your actions are causing or exacerbating his. Watch for patterns in his behavior, take notes, look at what those patterns are telling you about what works for him and what doesn’t.
Work to create an environment that doesn’t fight against autism, or depend upon this young man’s “coming out of it” in order to be successful, but that instead works with who he is and where he is.
Don’t jump in to tell him when he’s “wrong,” unless he’s hurting himself or others, work on figuring out WHY he’s doing what he’s doing and what that behavior can tell you about what he needs. Try respectful redirection when it’s necessary. Remember, as my friend Ari Ne’eman said after reading a draft of this post yesterday, that people who can’t communicate verbally still experience depression, anxiety and often significant mental health related challenges. And in the absence of any means of communicating that distress or accessing support or some means of addressing that, both violent and self-injurious behavior sometimes emerge.
If we’re going to address these problems, we need to start with the root cause, instead of giving in to notion that violence or self-injury are simply random behaviors arising from autism itself. That doesn’t shed any light on the underlying nature of these challenges, and it doesn’t make any progress in actually trying to address them.
That said, while you’re working toward discovering and addressing the underlying causes of his behavior, be as proactive as you can about creating an environment that will avoid triggering him rather than trying, in vain, to head him off after the fact. It’s not always possible, but the more we do ahead of time to prepare our loved ones for what’s coming next, the more comfortable they tend to be and the easier life becomes, for all of us.
It may not work, but it’s a damned good start.
I know I’m setting myself up as a target writing this. I get it. It will be very easy to say that a) I don’t know these people (which is clearly true) and b) I live inside a happy, shiny story and am therefore desperately unqualified to wade into these waters, which is, at least to some degree, absolutely right.
But I hear too many stories, I visit too many homes, I have too many dear friends in these situations, and I have seen too many people die to stay silent.
Caring for a person with a profound disability is hard. Caring for someone with a profound disability without a reliable means of mutual communication is harder. It requires patience and love and tenacity and faith. It requires energy and generosity and resourcefulness and a dogged dedication to the well-being of another human being. Above all, it takes respect, both given and earned.
And sometimes, it takes a hard look in the mirror, for all of us.
If you’re taking that look, approaching everything you do from a place of love and respect, seeking to understand what your child is using his behavior to tell you, including the impact of your own actions in the calculus, and doing every damned thing in your power to create an environment that works for all of you, keep at it. If you are working with every fiber of your being to find a way to allow your child to make himself understood, don’t stop. You’re doing the right things. They will make a difference. In my experience, it is becoming understood that makes all the difference.
In the meantime, those of us who can will keep working on changing the system so that it stops failing you when you need it most.
And know this — even though the stories are not always visible, I promise you, you are not alone.