If you’ve read this blog before, you already know that both my children have autism. Over the almost three years since they were diagnosed, I’ve often wondered if I shared their disorder. I mentioned it to several of their therapists at various points, but the response was invariably, “No, there’s no way you have autism.” One even added a reason, stating that my social skills are too sophisticated for an autism diagnosis. So I eventually dropped it.
Then, a couple months ago, my therapist sent me an article about the Intense World theory of autism. Basically, it says that autistic brains over-function, taking in too much information and processing it too fully, which causes pain and subsequent retreat from the intensity of the world. This particular article is about autistic people, rather than having little to no empathy, having too much. It explains lack of consistent eye contact among other things. People carry too much information about what they feel in their eyes. It also explains how my autistic children can be so very, some would say overly, empathetic. And why that empathy causes them so much anxiety.
The article helped me think about the boys and their empathy and anxiety, but it also resonated for me in my own life. I had heard that autism often presents differently in females, particularly because criteria are written for males, so I started to look into that further. I found this list of female Asperger’s traits. There are only two that don’t apply to me at all and two that only sort of apply.
Digging further, I found a book by a woman who was diagnosed with Asperger’s at 40, sharing her experience as a guide. Many events throughout my life make a lot more sense when viewed through an Aspergers-coated lens. I made a spreadsheet filled with those events that’s currently five pages long, but I think of new ones every day – I just haven’t written any more down yet.
I went into a December session with my therapist and told her I was pretty sure I had Asperger’s Syndrome. To her credit, she didn’t laugh or say no way. She said she didn’t see it and asked what made me believe it. I had come prepared with a book that listed additional (with respect to the DSM-IV criteria) characteristics of adults with Asperger’s. We spent the hour (yes, we ended up going over my time) discussing the items on that page of the book and how they relate to me. I think the one that finally convinced her was, “Inability to tell, write, or generate spontaneous, unscripted, or unplagiarised fiction” (p. 50).
“But you’re a writer.”
“Well??” (She actually wasn’t as belligerent as that probably seems, I just like the way the extra ? sounds in my head.)
“I think the key for me is in the word ‘spontaneous.’ I couldn’t tell you a spontaneous story to save my life. Zoo Keeper asks for them and my mind goes completely blank. I got nothin’. Any fiction I manage to get down on the page may look spontaneous, but it’s always been ruminating in my head for awhile. And the only fictional story I’ve ever completed has the structure of one of my favorite movies. I told myself it was an homage, but some of the scenes are so close to the movie they’re almost indistinguishable. To get something useable, I’ll have to scrap everything I wrote and start over keeping just a few characters. And admitting this scares the shit out of me because I’m afraid it means I’m incapable of finishing a novel.”
She was convinced by the time I left.
I also got a referral from one of the boys’ therapists and went for a diagnostic evaluation. The woman doing the assessment told me at the end of our last meeting that, when I walked in the first time, she thought there was no way I was an Aspie, but now that the assessment is done she’s sure that I am.
The book I assaulted my therapist with was The Complete Guide to Asperger’s Syndrome by Tony Attwood. Brand new in November, my copy is now highlighted and bookmarked (I don’t dog-ear). One passage in the Diagnostic Assessment of Girls section that completely hit home for me was,
“However, further investigation and observation at school may determine that the child adopts a social role and script, basing her persona on the characteristics of someone who would be reasonably socially skilled in the situation and using intellectual abilities rather than intuition to determine what to say or do. An example of camouflaging strategy is to conceal confusion when playing with peers by politely declining invitations to join in until sure of what to do, so as not to make a conspicuous social error.” (p. 46)
“From an early age, girls with Asperger’s syndrome have applied their cognitive skills to analyze social interactions…where a girl has developed the ability to conceal her signs of Asperger’s syndrome in the playground and classroom, and even in the diagnostic assessment, then parents, teachers and clinicians may fail to see any conspicuous characteristics of Asperger’s syndrome.” (p. 47)
I’m a pretty good mimic and forty-five years is a long time to observe and analyze social interactions. I’ve always figured out what to do in social situations intellectually; I didn’t know there was another way. Being from a military family, no one wondered why I was shy or didn’t have many friends. Once we settled in Colorado, I changed entire groups of friends every three years. I’ve lived my entire life terrified that someone would figure out I’m a complete fraud. So, naturally, I’m now going to expose myself by writing about it on my blog. 🙂
I’m going to spend this year (or however long it takes) boring the Quirkyverse with analysis of my particular brand of autism. I’m hoping the journey will help me learn to accept myself as I am and not work so hard to live up to my imagined expectations of others. Plus, if you know me in real life, maybe these posts will explain why I was rude that time and didn’t even know it. Or why I apologized profusely for something you didn’t remember happening and couldn’t imagine why it would upset you even if you did.
Special thanks to BC Maven, as the first person who’s initial reaction wasn’t “No way are you autistic.” Instead, she said, “It wouldn’t surprise me.” I will never be able to adequately express how much that meant to me.