So I haven’t posted all week then I post four (or is it five?) times in one day. That’s the way things work when you’re flying by the seat of your pants. I’ve been saving up all this stuff to say until I’ve actually had time to blog it. And today’s the day I actually have time to blog it (of course, I am ignoring my list of other, less fun things to do like wrapping all the presents stacking up under my Christmas tree…).
As I’ve posted before, both my son Matthew and my husband Mike have Asperger’s syndrome. I’ve been hesitant to post too much about Mike in this area because I wasn’t sure how he felt about going so public with it. But Mike has just started his very own blog where he has started to talk openly about his diagnosis, so I guess it’s safe for me to do so as well.
I think Mike was inspired by John Elder Robison’s blog about living with Asperger’s. John speaks very openly about his autism and how it affects relationships in the real world. He was the author of the book, “Look Me in the Eye” that I wrote about last summer.
It’s only in the last year that we’ve realized that Mike has Asperger’s. Once Matt got his diagnosis and we started doing some research, it was obvious that Mike has it as well. This is apparently very common – once a child is diagnosed, the percentage of their parents who are also diagnosed is very high (I think I saw a number like 57% or so in some research).
As I posted back in July, once Mike received his diagnosis, he was very concerned about how marriages where one spouse is an aspie (nickname for a person with Asperger’s – don’t worry…it’s politically correct) are affected. He found all sorts of very discouraging online ‘support’ groups where spouses were discussing how unhappy they were in these marriages. Discouraged by the availability of online support, he recently went online and purchased some books that he thought might help us find ways of dealing with the unique marital issues we may face.
First of all, the title of Katrin Bentley’s book and the front cover are so discouraging – who wants to think of being “alone together” (how sad does that sound?). And the image on the cover of the two hands not quite meeting each other…again – very sad.
But I read through the book anyway – and what I found was what sounded to me like a somewhat angry, bitter woman who was trying hard to make the best of things (but at the same time, she lets you know how hopeless and impossible things really are). She can certainly assign the disorder blame for some actions, but when her husband starts to have an affair (mainly of the heart) and says that he “loves you [the wife and mistress] both the same”…well…it’s time to cut your losses and leave. That’s a deal-breaker in my book – Asperger’s or no Asperger’s.
The other book by Maxine Aston was not as angry, but at the same time sounded hopeless. Page after page said that basically, the non-aspie spouse will have to make all the sacrifices, changes and effort in order to make the marriage work. As I read through the pages, my heart dropped and I began to grow sadder.
About 3/4 of the way through the second book, I closed the pages and told Mike that while I appreciated his efforts to help, I had decided to stop reading. I told him that I really didn’t think things were that bad with us to start with but that these books were trying to convince me that they were.
I’m certainly not being naive – I realize that there are unique challenges we face and that there are some things that will never change and will always remain a challenge. But by continuing to read these types of books, it cast a spotlight on the negative aspects of an Asperger’s spouse without focusing on the positive aspects that a diagnosis can bring.
At that point, Mike said that maybe I should write my own book. I’m not a neurologist, marriage counselor or psychologist, so I doubt that a book that I write on the subject would hold any merit. But I do have this blog and I thought maybe if I write a little bit now and then about my own aspie marriage, it might help someone else whose spouse has been newly diagnosed.
So…if you’re reading mainly to get some new craft ideas or for information about owning a goldendoodle, these posts may not be of interest to you. But if you’re wondering what it’s like to be married to someone on the autism spectrum, maybe I can provide a little insight into what a happily married (although sometimes frustrated) non-aspie spouse is like.
So…here are a few examples of some communication breakdowns that are classic aspie moments…
While away on business travel, I called Mike and asked if he missed me. His answer was that no, he didn’t miss me – he and the kids were fine. As a non-aspie, this hurt my feelings – how could my husband not miss me when I’m gone? But…from his perspective, he was busy with the kids, taking care of things around the house…he didn’t have time to miss me. Sure, he was happier when I was home, but if he told me he missed me, that might make me feel bad for not being at home. He wanted me to know that things were going well – that he was handling things just fine. Here’s the problem – as a result of his disorder, Mike truly didn’t realize that saying that you don’t ‘miss’ someone can hurt their feelings. Since we now have a diagnosis, I can explain the miscommunication to him, he and I can understand why he acted the way he did and he can make a note not to answer that again – the socially correct answer to the question, “Do you miss me?” is, “Yes” – even if you don’t.
Another similar example – again, I was away on travel and joked that things were going so well at home, he didn’t really need me. Looking for reassurance, I jokingly asked, “You don’t need me, do you?” to which he replied, “No, I don’t need you.” Again, as a non-aspie, you can see how this would hurt my feelings. But similar to the other miscommunication, he actually meant that he was with me because he loved me and wanted to be with me, not because he needed me. Since I now realize that he has a social disorder, instead of getting angry, I told him that I was hurt by that statement and that people actually like to feel needed. I was still hurt…but with an Asperger’s diagnosis, even though those feelings are still there, we can at least better understand the reason for the miscommunication and learn from it.
Another frequent source of miscommunication is illness. People with Asperger’s often have a lack of empathy – this is especially apparent when the non-aspie spouse is sick. When we say that we don’t feel good, we expect a certain level of sympathy in a statement like, “I’m sorry you don’t feel well – why don’t you go lay down and I’ll bring you some chicken soup” (or aspirin or whatever the illness requires). Then the person will check in on you every so often and see what you need, how you feel…maybe feel your forehead for a fever…but what Mike usually says is something like, “Go upstairs and lay down then” and I don’t hear from him or see him again until I’m well. As a person with Asperger’s, Mike treats me exactly how he’d like to be treated when he’s sick – when he doesn’t feel well, he likes to go upstairs and be alone until he’s better. He has no need for being ‘babied’ and doesn’t understand why anyone would need that. We’re still working on this issue, but at least with his diagnosis, I have learned not to take it personally. And if I need chicken soup, I now know to ask for it instead of assuming that he knows that he should offer it to me.
So it’s getting late and I think I’m done for now – I hope that I can continue to give examples that give some insight and hope to spouses of people on the autism spectrum. It’s not all hopeless…there’s no reason to be bitter…and if you’re not having major issues, don’t read self-help books…they’ll only point out all the things that could be wrong.