My wife would like to share some of her perspective, so she gets to be my first guest blogger. Here is her post:
When Carlyle and I met and started a long distance relationship 11 years ago, I had no idea what Asperger’s syndrome was. My knowledge of autism came from the movie Rain Man. I didn’t have any friends or family members with children that had been diagnosed with autism. It essentially had not touched any aspect of my life. We met on line so a lot of the social difficulties weren’t there. He didn’t have to deal with all the “noise” that comes from facial expression and body language. We instantly felt like old friends and soon I fell in love with a man that was made of incredible strength, determination, courage and honor. We met after his accident, so his arm was already paralyzed. There were some things that he struggled with, especially socially, however I thought that probably had a lot to do with his physical disability. He had been through a lot and suffered alone which resulted in episodes of depression. All of this was easily explained by the accident and the injuries that resulted from it. It wouldn’t be until 9 years later that we would discover that this was not the case, at least not entirely.
Fast forward through a wedding, a difficult lay off, a masters degree, several jobs and a baby and that brings you to 2009. Carlyle was in tremendous emotional pain and I was at a loss. I’m a “fix it” kind of person and this was really not fixable. I don’t recall how or why we started researching or ran across autism and specifically Asperger syndrome, but there was definitely an “ah ha” moment in there somewhere. Carlyle carries a lot of emotional pain from his past so that was one clue that I always went back to when I kept thinking there was something else going on. Something besides the accident and losing the use of his arm. The pain he was constantly dealing with happened throughout his childhood and the accident was when he was 23. I was beginning to think he was suffering from PTSD (Post Traumatic Stress Disorder) and we inquired about some therapy when we were referred to a local autism specialist and started the testing process. I think for both of us we were relieved that there was a name, a reason, an answer. It’s not about labeling a person, it’s about discovering the why behind the what and figuring out ways to help the person on the autism spectrum and those that love them. I believe without a doubt, this discovery and the passion to help others has saved his life.
Marriage is hard all on its own. Not only do we now have pink versus blue thinking, we’ve got a spectrum of other colors as well. This brings me to the question I had to ask myself after several years of marriage and feeling I hadn’t figured it all out yet. How do you love a wounded Aspie? Well, here is what I discovered. You love out loud and without reservation. You learn their love language and you make it as obvious as possible. Aspies do not get subtle gestures. This was hard for me. I’m not a direct person. I’m very intuitive and therefore do more observing than taking an active roll. I’m learning, however. You have to tell them you like them. They can’t just tell. Spend time with them in their world. Learn what they like and join them. A wounded aspie will have a history of pain and heartbreak. It will take an army to help change how they view themselves and what they believe the world thinks of them. They need continuous praise and they need to know constantly that they are liked and accepted. Once just doesn’t cut it with them. Especially if they have a history of negative. They can’t “move on” or “get over it”. One of the most important things I had to learn was to not take things personally. I can’t fix the past and really what they want is for someone to listen and acknowledge the pain. A lot of people may feel they play the blame game, but really they just want to have a voice and be heard. Carlyle’s whole being screams with a desire for connection and yet he can’t ever quite seem to get it. This is so hard for me, because I feel as though relationships are something I do well and yet it’s never perfect. All that said, nothing can be perfect. Carlyle and this journey has taught me so much and I’m grateful for the opportunity to help others and be the wife I was meant to be.