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.
Oh my lord…I DO THAT STUFF.
Bravo to you for your courage and perseverance in getting the diagnosis you knew fit your life.
But, but, but, the cognitive navigation of social situations? THe apologizing for stuff that other people don’t even remember (a coworker still thinks it’s ‘funny’ 9 years later that i wrote her this long apologetic note when i first worked with her because i thought i’d said something stupid) and I always felt like i need training wheels for social cues. Ditto on the hyper empathy. I’m like hanging on the shirttails of your disorder now…
Deep breaths, Diva baby. It is much more than the social stuff. I’ll go into much more detail, but just having the social stuff I described doesn’t mean you’re autistic.
And even if it turns out you are autistic, it doesn’t change a damn thing about who you are. You would still be the fabulous, irrepressible, wonderful diva we all love. But maybe with more clarity about how to navigate life without berating yourself for any self-assessed false moves. 🙂
Wow. That table made a huge impact on me. I think I’ll send a link and the title of that book to my therapist. This is hugely interesting to me. I look forward to reading about your journey and explorations. Given that I could barely talk during my latest (and many previous) meltdown, this strikes a chord. Good for you for pursuing it until you got a fair diagnosis.
You know, selective mutism is a thing. I hate that name because it sounds like it’s a choice. I think it should be called situational muteness. Anyway, there’s a whole chapter on it in one of the books I’m reading with lots of anecdotes from autistic women.
You know, this is really helping me look at my depression and anxiety in a different light. Hoping it will help me handle them in a different way as well. 🙂
Looking forward to reading more. Because, here’s part of my story:
about 10 years ago my sister-in-law was in the process of figuring out her youngest daughter, and sent us a check-off chart. Which I read outloud to my husband (without mentioning exactly WHY this was happening, I forget to preface things like that. A. Lot). He listened and said, “yep, sounds like you.”
I went blank. Quiet. Numb. It was a diagnosis list for autism, a list of things to look for to place your child “on the spectrum” (first time I’d ever heard that phrase).
“It was about Nikki,” I finally choked out.
“I know. And you, too. Where do you think she gets it?” We then went on to discuss how many of these markers our youngest daughter also has.
Yeah, I am really happy you’re investigating this. For you, and for the rest of us.
Also? Next trip we make to see the Seattle kid? I’m dropping by, whether you are ready or not. All I need is 3 minutes. And a quick hug.
(who keeps learning, even after 52 years)
I’m laughing at the “forget to preface things like that” part because it’s something I do, too, that’s kinda spectrummy. I forget that everyone around me is not privy to the ride going on in my head. Which sometimes makes people think I’m impulsive because I suddenly say to them that I’m going to go do something they’ve never seen me do before. Because it’s the first time they’ve heard me mention it. It may even be the first time I’ve mentioned it out loud, but I don’t realize it because I’ve been thinking about it for maybe a year or so.
A friend recently told me, “Some of my favorite people have Asperger’s.” Mine, too.
Are you kidding? I would love to see you! Just let me know before you come so I can make sure I’m around. And don’t mind the awkward silence because I really am glad to see you. On the inside. 🙂
Adult diagnosis is incredible. It was only a few years ago that I was diagnosed with ADHD and it was this sense of “oh wow, I’m not awful, I’m just a little different” and it made it easier to find solutions and methods of coping that worked for me, even if they didn’t work for a “normal” person.
I hope that your own diagnosis helps you as much as mine helped me. Sometimes just having the better vocabulary to discuss it helps me when working with others (when I used to be in an office):
“hey, can we have this discussion away from the music?” “Just tune it out” “I’m sorry, my ADHD makes it really difficult for me to do that and I want to be certain I can focus on what you’ll be saying. There’s a conference room over there that looks empty.”
It’s kind of freeing, isn’t it? And a little daunting at the same time, but mostly freeing and helpful. I love that your diagnosis gave you the freedom, and vocabulary, so tell people what you need. 🙂
This is amazing. As usual with me I have nothing terribly insightful or intelligent to add, except to say that I admire you so very much. I look forward to reading further installments and maybe one day soon crawling out of my own ass and getting together with you and the QBs in person.
Interesting! It’s like the recent Parenthood storyline where Hank realizes he might have Aspergers. Except it comes as a bigger shock to him.
I had no idea! I kind of stopped watching Parenthood last season because the cancer storyline was hard for me to watch. I have this season Tivoed, but have only watched the first episode so far. I’ll have to get back to watching it soon.