By Julie Obradovic
The first time I heard that someone had killed their child with Autism was several years ago. I was actually surprised there weren't more murder-suicides by that point in time, but I was certainly thankful there weren't. As I thought about the incredible stress so many people found themselves under, how isolated and desperate they were, and how completely overwhelmed and exhausted they were, it seemed almost inevitable that someone would lose it. Unfortunately, it has been inevitable. Parents are indeed killing their children with Autism.
I realize these murders induce tremendously strong feelings. Many people believe that absolutely under no circumstance is there any excuse for such behavior, and the perpetrators of these heinous crimes deserve not an ounce of pity or sympathy. Children by no means come with any guarantees, and at no point do we simply get to kill them because things didn't go according to plan. I get that mentality, I do. But I also have a deep desire to understand this behavior so that we can start to prevent it more effectively, if that's even possible. I'm afraid that if we simply shame or condemn parents who are having such violent thoughts they may be more reluctant to reach out for help. It's the most unnatural behavior in the world to kill your child. Clearly, clearly, something else is going on here.
One thing I have noticed about these acts is that they always fall into one of two categories: a planned murder-suicide that either kills them both or almost kills the parent; or a sudden, horribly violent attack with no attempt on the parents' life, but one that leaves them in a comatose and suicidal state anyway. This tells me that the parents are not acting out of selfishness, but rather agony and a very distraught state of mind. In a planned murder-suicide, the parent appears to feel obligated to also end his/her own life. They aren't murdering the child to run off to Mexico or go and finish grad school to further their career. They simply want the pain to stop for both their child and themselves and see no other way out. It's total and complete desperation. And in the instance of the violent attack, such as the recent stabbing, there's perhaps no thought what-so-ever. They just snapped.
Now, don't get me wrong, I'm not privileged to these peoples' state of mind, and I'm no doubt speculating. But as a mom who has suffered from depression, one thing I do know is that this was the hardest part of the Autism experience to share with anyone. I never felt comfortable talking to anyone about my feelings, especially since I feared I would be perceived as extremely selfish. There was no time for focusing on me, and really, I didn't have any idea how to manage the intense and profound sadness I was feeling anyway. It was better just not to deal with it at all than let it come spilling out messily with no way to clean it up. I always said I'd deal with it later. But funny thing, later always came out as anger and being ashamed of that only made the feelings worse, the perpetual cycle of guilt, shame, and pain accelerating in my own private hell. Thankfully, I never spent too long in one of those horrible places, but still, I remember that pain well. It was all consuming.
I wonder if as a community we are helping each other enough. When we go to conferences and support group meetings, our focus is almost exclusively on our children. Our lives are consumed with addressing their medical needs, educational needs, therapeutic needs, safety needs, dietary needs, social needs, financial needs, legal needs, and more. Collectively we have done an admirable job of networking and researching and advocating in order to do these things more effectively, and every so often I have seen sessions that focus on keeping our marriages in tact. However, I would argue we have done a horrible job helping ourselves. We know logically that you can't be good to anyone else until you're good to yourself first, but after meeting and befriending hundreds of Autism parents, I can't think of any of them that have ever really put themselves first. Not a one.
The truth is, we need the help. We need better strategies for dealing with the stress Autism brings, creating a support team around us, communicating our emotions to friends and loved ones, getting and asking for respite care, and more. We need time to take care of our physical health, our nutritional needs, and honestly, just to get some sleep or have a good cry. Perhaps we could allocate at least some of the money from our support groups and federal funds to start some sort of Parent Wellness movement. We need professionals to help educate us about the cycles of grief, anger, depression, and desperation that we repeatedly and routinely go through. We need these professionals to become more aware of the profound issues we are facing so that they can better address our needs and help us identify the psychological warning signs that we may not be heeding. We need them to spear head community education on our behalf to rally our neighbors and loved ones around us. I guarantee they really have no idea, as so many of us simply don't share it with them. And most important, we need to make a safe place for parents who are feeling this desperate to reach out for help without judgement or persecution, like a 24 hour hotline. If these resources already exist, we need to emphasize their availability, encouraging and extending their reach as far as possible. And if they don't, now may be the time to create them.
Autism has reached critical mass, and it is an unprecedented crisis unlike anything our society has ever seen. I urge our community to put the needs of our children first once again, but this time, by uniting to take better care of ourselves. I certainly don't have all of the answers, and I am well aware of the limitations that exist that prohibit us from taking better care of ourselves, but together, I am confident our community can do anything. If we make it important, it will happen. The better we are, the better we can be for our kids.
Please leave your ideas in the comments section about what you would like to see in terms of effective support for parents from friends, loved ones, neighbors, and more. What do you think we could be doing better to help each other? What resources would you like to have in your own life for managing Autism?
Julie Obradovic is a Contributing Editor to Age of Autism.