(*I have come to regret beginning this post with these statistics as I think it takes away from the main point. ALL marriages will inevitably encounter stresses that will place a strain on the best of marriages. It is not about blaming autism. It is life.)
The divorce rate of parents with an autistic child is said to be 80%. However I have found no studies to support this statement or even any articles showing where this seemingly arbitrary number came from. Challenges of any kind can strain relationships. As the parent of an autistic child in addition to the stress and financial strain, there are the legal hoops one must jump through to get ones child basic services with the Board of Education, the Board of Public Transportation, insurance companies, the lawyers, the hearings, the paper work and the sheer bureaucracy of advocating for your child. It is the workload equivalent to running a small business if not more. When you add the fact that many autistic children have disruptive sleep patterns causing further complications to a family already struggling to cope, you have a situation that will test the strength of any marriage, no matter how solid.
Richard and I have certainly had to weather our disagreements, though fortunately around the big issues: methodologies, treatments, our vision and hopes for Emma – we agree. I know of a couple of instances in which one of the couple just couldn’t cope any more and the diagnosis pushed them over the edge and out of the marriage. I remember early on after we had received Emma’s diagnosis I looked at Richard and said, “How are we going to get through this?”
Richard replied, “Together.”
And for us in many ways it’s that simple. (Though I need to be reminded of this from time to time.) We don’t do it alone. When I am having a moment usually in the middle of the night perseverating on some worry about something I have little control over or which simply hasn’t happened yet – will Emma ever live independently or who will take care of her when we die or will she ever be able to read and write or will she need tens of thousands of dollars worth of dental work because she still sucks her thumb (yes) or will she ever be out of diapers (these are a few examples from my current playlist) or any number of concerns ricocheting around in my head like a pinball, Richard will reassure me, “It’s going to be okay, we’ll get through this.” There are times when I feel as though I am trying to claw my way out from a dark abyss of fear that ambushes me, pulling me down. Richard and I have a kind of short hand for this.
“You’re spinning out,” he’ll say after listening to me for a while.
“I know,” I will reply and I do know. The knowledge doesn’t help me stop myself.
And then he talks me down or if that fails, because I can be stubborn, he will listen a while longer before finally interrupting me with, “Okay, my turn. You’re totally out of control.” His is the blunt, direct approach. It can be quite productive. He will then go on to point out why my thinking is deranged. 90% of the time I can listen to him and calm down. Richard has his own version of spinning out, but it’s usually work-related. Which isn’t to say he doesn’t worry about Emma or Nic, he does, it’s just he is better at having some perspective on them and doesn’t get as easily thrown into the “doomsday pit” of despair.
When Emma is having a melt down, which can go on for quite some time, we pitch hit. One of us will try to soothe her and when the other sees it isn’t going well – our patience is fraying – the other will jump in. Most of the time one of us is able to maintain a calm the other is lacking. Of course this leaves poor Nic fending for himself. Though Nic, too, has gotten quite adept at calming things down. “Here’s what you guys need to do,” he’ll say, looking up from his latest drawing of some fanged, blood dripping, all powerful monster. “You can’t let her get away with this. She won’t stop and she needs to learn she has to stop.”
Richard and I look at each other with raised eyebrows.
“You need to choose the thing that’s most important and work with her on that first. Because otherwise it’s just too much,” he’ll add.
Smart kid. (A post devoted to siblings of autistic children next week.)