April is Autism Awareness Month. Mike and I talked earlier in the month about doing our small part of educating others about Asperger’s Syndrome by talking about how the disorder affects him, in particular. We can’t speak for others on the spectrum. We can’t presume to know how they experience life or deal with their differences. All we can do is share what we know, what we are learning, and how we have made adaptations in our lives to accommodate Mike’s differences and my/others reactions to them.
It’s important for us, again, to let people know that we aren’t doing this for sympathy, to make people feel like our lives are harder than others, or to whine about the cards we were dealt. There’s hardly anything we will talk about that other couples or families haven’t experienced. With Asperger’s, things may just be experienced to a more extreme extent than “neurotypical” couples. We have a good life. For a couple living with Asperger’s, we have been incredibly lucky. According to statistics, we shouldn’t still be together. Many relationships in which one spouse has Asperger’s end in divorce. (Trust me, there’s been times when we’ve been close!!) We were fortunate in that all the stars were aligned right for us in so many ways. We’ll talk about that more in future posts. But for now, here’s our first attempt at sharing what Asperger’s looks and feels like for Mike.
Linda: Tell me your interpretation of how this all started. How did we get to Asperger’s?
Mike: Well, you were at a conference a year or so ago about autism. The presenters were talking about Asperger’s Syndrome, and all of a sudden you had a hunch that that’s what was going on for me. I don’t know if you had thought anything like that before. (I had – for a couple years. I had mentioned to my Speech Pathology colleagues that I wondered if Mike might be on the spectrum, but I didn’t feel like I had enough information, or that there was enough information out there yet, about adults with Asperger’s Syndrome.) You brought some information about Asperger’s home and we talked about it a little, then we bought a book about Asperger’s (Asperger’s from the Inside Out by Michael John Carley) and when I started reading it I asked if they had written the book just for me, because so many of the things he talked about were things I had trouble with.
Linda: Can you tell me what things jumped out at you as you read?
Mike: Things like not picking up on social cues. I don’t always “get” what people are really saying with their expressions and body language so I miss the real meaning of their message alot. Like, alot of times I know I keep talking when other people are ready to be done with a conversation. And sometimes I have a thought and I say it without thinking first. I know that I interrupt people when it’s not appropriate – mainly because you tell me I do!
Linda: So we were both thinking that there were alot of characteristics about Asperger’s that fit for you. What was the next step?
Mike: We talked about where we could go for a diagnosis. The choices were between Mayo and the Fraser Clinic in Minneapolis. The consultant you were working with in the district told you about the Fraser Clinic.. I decided we should go to the Fraser Clinic because it was closer and if we needed to go back and forth for awhile, that would be easier. I had to call for the appointment. It took me a few days to get to it. It was on my “To Do” list for awhile.
Linda: How did you feel about going in for a diagnosis?
Mike: I guess I thought maybe it would help us get to the bottom of something. But on the day of the evaluation, I was a little anxious. I wasn’t really sure if Asperger’s was the right diagnosis. I wondered if ADHD wasn’t more accurate for me.
Linda: So we went through the evaluation. You did some testing with a psychologist, and I did an interview with her intern. After they conferred, they came back with a pretty definitive diagnosis of Asperger’s Syndrome. How did you feel about that?
Mike: At first I was kindof surprised that they could make a diagnosis after a relatively short session. I mean, we were only there for a couple of hours. But I guess there were certain things they were looking for, and I had alot of them. Like, during a conversation with the psychologist, I missed alot of the social cues that she used to guide the conversation in different directions. She said I did more talking about me (that’s called being egocentric) than asking about her. I kindof took off talking about my interest in sailing and just kept going. And I know I had trouble keeping the conversation going appropriately when the psychologist wasn’t putting in alot of effort. I don’t always know how to do that small talk thing. I think we were both kindof expecting a diagnosis of Asperger’s, but I was a little disappointed that they didn’t have any real suggestions for us. I was thinking we would at least come away with an outline of things to work on.
Linda: So…has anything changed for you since we got the diagnosis?
Mike: I’m consciously trying to be more observant when I’m with other people. I’m consciously working to make my brain focus on and pay attention to what the other person is really saying. In the past, alot of time I think I was just hearing words.
Linda: In hindsight, does having this diagnosis help make things that happened in the past, from the time you were a kid until now, make more sense?
Mike: Well, I think sometimes there were negative reactions because alot of times I didn’t get that when someone asked something of me it was a “need”. I tended to think of it more as a suggestion, and that was frustrating for people.
Linda: Is that the only negative consequence you’ve experienced, do you think?
Mike: There were probably alot of others (there were – but that’s for a future post), but I didn’t recognize them so it doesn’t really bother me.
Linda: Anything else that’s changed for you since getting the diagnosis?
Mike: It helped me understand that I wasn’t crazy, lazy or just plain rude. Alot of times I just didn’t understand why I did the things I did. I never want to hurt anyone or to disappoint them or frustrate people. But I know I do. Now that I understand there’s a reason for why I do what I do, I feel like there’s some things I can change to make things better.
Linda: Is this difficult for you to talk about? You look like you want to run.
Mike: Yeah, I guess it bothers me a little. First, I want a cigarette. And then I feel like I don’t know enough about this yet to answer your questions completely so it makes me feel restless – maybe anxious.
Linda: OK – let’s do a couple more questions and call it a night.
Linda: Alot of the literature talks about people with Asperger’s Syndrome having special interests that they frequently get lost in. Do you think you have any of those?
Mike: Oh yeah. I would say computer games, logic or Sudoku puzzles, reading, watching sports and programs like NCIS. When I’m doing those kinds of things, I feel more relaxed, my brain is busy and my body is less restless.
Linda: How about sensory things. Any of those issues that bother you? Like, some kids I work with don’t like the feel of certain kinds of material, or they don’t like certain textures or colors of food…
Mike: I don’t like to wear regular shoes and socks – I’d rather wear sandles whenever I can because my feet get too sweaty and I don’t like that feeling. When I was young, I had to have the radio on or I couldn’t go to sleep – I needed that background noise. I have trouble filtering out all the sounds around me. Like when we’re at a restaurant, I have trouble concentrating on a conversation you and I are trying to have because I hear everything around me. Then when we get home, I need to go somewhere quiet to sortof recover. It takes alot of energy to try and stay focused.
Linda: One last question for now. You’re 58 years old. Why did you feel like it was important to get an official diagnosis when we had pretty much figured out on our own that we were dealing with Asperger’s?
Mike: Well, I hope I still have alot of life left to live and if there’s things I can change to make it better, then I want to do that.
Linda: Sounds like a plan! We’ll figure those things out one little step at a time, my dear!
Here’s to walking and talking with you!
Linda and Mike