After years of working to help my Aspie son, I have decided, in the phrasing that my husband has adopted, that I am “dealing with” Asperger’s Syndrome myself. No official diagnosis – just my fairly well-informed opinion. I have a teenage boy on the spectrum, the ways that he and I differ made me think for a long while that I must just have shadow symptoms of autism, like many family members, or be trying too hard to identify with the boy I love so much. The main difference between us is that he’s mostly an open book. More like a radio station continuously broadcasting whatever he’s thinking and feeling, often at an uncomfortably high volume to everyone within a large radius. I’m quiet. For the most part I’m disguised or hidden away. I’ve developed a whole arsenal of coping strategies that have become so automatic that it’s hard to tell what’s me and what’s not.
This year I met some girls and women with Asperger’s at a parent support group that I attend, and I began reading about females on the spectrum. Out of the scattered pieces of my life a pattern began to emerge. Old memories and more recent experiences started to make sense in this framework. My constant compulsion as a child to be in a rocking chair. A period of unexplained isolation and bullying as a teenager. My extreme academic ability coupled with a general lack of common sense about the world around me. A preference for being in the company of boys rather than girls, because it just seemed easier. Mimicking the behavior and conversation of people around me, because I didn’t know how to generate my own. Approaching problems with my intellect, rather than my emotions – which were usually confusing and difficult to regulate. Pretending my whole life to know things I didn’t actually know, because I always had a sense there were things everyone else knew, and I didn’t. Always feeling when I was young that I must be from someplace else and wanting to know how to return there.
For most of my adult life, I’ve felt a compulsive need to follow rules even when they serve no practical purpose. People often misread my moods and misunderstand my words, even when I think I’m being perfectly clear. I notice myself sometimes feeling more comfortable talking with people for whom English is their second language, because the conversation is more straightforward. I suffer from multiple forms of sensory overload, most notably with sounds. I have tremendous difficulty shifting gears once I’m engaged in an activity or a particular thought process. I get completely lost in whatever is going on in my head and losing track of the world around me for extended periods of time. Despite extreme social anxiety, I can be extremely talkative on some subjects that genuinely interest me and almost unable to generate any conversation at all in the absence of those subjects.
I did make a brief attempt to get a diagnosis a few months back. I couldn’t find a specialist on my insurance plan, so I settled for a well-meaning young mental health professional who at least thought it seemed like a reasonable possibility. However, he was much more interested in discussing my anxiety issues and thought I should come in for therapy. The thing is, I don’t really want therapy, and certainly not from someone who has no idea what it’s like to be an Aspie or a parent of an Aspie. I don’t especially want to change who I am or to be more like everybody else. I just want to have a clearer understanding of what makes me tick and why I respond to life the way that I do. It also helps me to understand what makes my kid tick, and that helps me to be a better parent and a better advocate for him.
My child’s diagnosis isn’t really as official as it could be. He started seeing professionals and receiving various therapies and assistance when he was only a year old, and no one felt a specific label was all that important, because he was clearly somewhere on the spectrum, and because it wouldn’t change the recommendations for what would be helpful or even the availability of the services. When he was in first grade it became necessary to be labelled by the school district in order to receive the help he needed, which was an IEP with accomodations and a full-time paraprofessional. We resisted the label for a long time, because we thought it would make our child stand out more or become a self-fulfilling prophecy, and we didn’t want to limit his potential. The label has actually turned out to provide much more benefit than cost over the long run. With the help that he receives and the increased understanding of the people around him that he’s gotten as a result of having a label, our son has made tremendous progress in all areas of his life.
For me, the help and understanding I didn’t even realize I needed has come in the form of wandering into this community of people who are either on the spectrum themselves, or who love and accept someone who is on the spectrum, or both. I’m so grateful to so many individuals who have been brave enough to share their experiences that let me know I am truly not alone. In that spirit, I recently agreed to be the subject of an interview for a friend’s Aspie daughter who was writing about Aspie females for a school research paper. I found that sharing some of my experiences with her also helped me to clarify my own thoughts.
I’m not sure I want to share this view of myself casually with the world at large, since most people don’t seem to understand much of what it means to be on the autism spectrum unless they are living with it. Even in my son’s case, we are blessed by his ability to function well enough that we can tell people about his ASD when we feel like there’s a reason to do so, and at other times we don’t feel a need to bother. I do feel like I want to officially introduce myself to the rest of this community. Hi. I’m Diane, and I’m a self-diagnosed Aspergirl.