The Sixth Stage of Grief

When I first discovered that I had (What Was Formerly Known as) Asperger’s, I was sitting on the couch with my laptop. I knew about the disorder because my nephew was diagnosed with Asperger’s Syndrome four years ago and I read up in order to understand him better. For several years, there was always this nagging thought in the back of my mind that did not make it to the forefront of my consciousness. I am the type of person who doesn’t realize she is cold until she’s driven in the car for 45 minutes in the wintertime, with the heat off. So the little details that explain the challenges of my life stayed dormant and didn’t shoot forth until they came (and still come) in little bursts of clarity at 3:00 in the morning or at other unusual times. But there was this crystallizing moment where something sharp stirred in my brain, spurring me to actually search for Asperger’s in Women instead of just Asperger’s.

I remember that I was shocked. I felt like the joke had been on me; I was the one who educated people about autism and especially Asperger’s (because to most people, it’s invisible; what you don’t understand, you don’t see) because I wanted people like my nephew to be given a break. Regular people, please don’t always assume the kid in the grocery store acting like a brat is actually a brat. Autistic people have different brain wiring and they can’t change their brain apparatus any more than neurotypical people can change theirs. So give them a break, Neurotypical People! That was my message.

In my earlier life, which I now find ironic, I used the following phrase to describe certain people: “socially retarded.” Now before you get all worked up about the phrase I just used, please let me defend myself a little. I took French for two years in high school and for two years in college. The French word, “tard” means late. I have identified with that French word my entire life because with the exception of learning to read, I have been late in just about everything. When I think of the word, “retarded,” I picture someone who is perpetually late. In that regard, there should be no objection to my use of the word. And now that I realize that I am the one who is socially retarded, I feel like my use of the phrase is even more justified. Socially, people like me can understand other people and we can have empathy for them. It just takes us some time and, for me at least, it almost never happens on the fly but later, in the middle of the night or after a month. Or sometimes, years.

For me, the stages of grief were out of kilter and I even skipped some stages.

In my family, I was the kid who always did really well at end of grade testing and in school in general. For the first few years of school, I was a Whiz Kid. Never in a million-bazillion years would I have thought I had autism. My inadvertent Denial was the result of ignorance about autism and its many flavors and amplitudes, rather than an unwillingness to admit to it.

Anger, the result of frustration at the visceral level and my fight-or-flight response to normal stimuli, was something I was born with, not resulting from diagnosis.

I have always been good at bargaining; you should have seen me once in Rome while dealing with a street vendor. But I never really experienced Bargaining about my autism.

For me, Depression came in full force in perimenopause, a few years before I got autism ( 🙂 ). I had (what I now recognize as) smaller bouts of it all my life. I’m not the best at self awareness or even noticing my own pain, so if you’d asked me about depression all those years ago, I would have said, “I never have depression.” I would have also said, “I’m not angry” and you would have said, “So why are you wearing your angry face?”

After some of the shock of diagnosis wore off, I experienced alternating waves of relief and Depression. Now I could explain the struggles of my life: the spotty resume, the realization that most of my jobs had been part-time and short-lasting, that it took me seven years to get a bachelor’s degree, why even now teen-aged girls make me nervous, my need for home and security, why I couldn’t figure out exactly which question a person was asking so I answered questions not even asked and ended up seeming dishonest, why I have a larger than usual personal zone, why my skin actually crawls if people get too close to me, why I don’t like shopping or large crowds, why I look at people’s mouths during a conversation, why the path of my life is always from point A to point B and I often walk right over anything in between, why I can talk to a thousand people at once but have more trouble when talking to one or two, why people think I’m rude when I’m trying very hard to be the opposite. And, if you know anything about (What Was Formerly Known as) Asperger’s, you know some of the many other things on the list.

Coupled with the relief that the source of my issues had a name, there was also the sinking feeling there was nothing I could do about any of it. Before, I had been rather ignorant about my challenges (everyone has challenges, right?) But now, I started seeing myself as others see me. Or as I think/fear that others see me. Now I became the observer and the observed. It was quite a depressing concept.

Acceptance is what you do when you can’t do anything else. Or want to do anything else. I accepted my autism quite readily because it explains everything. It’s like accepting the Theory of Gravity. I’ve observed it all my life so I didn’t have any problem accepting the name for it, when I learned about it in school. I did have a problem when I was told that Sir Isaac Newton discovered it. I felt certain that people had observed it for eons so how could he have discovered it?

I know there are five official steps of grief and now that I have been through all five, I realize that there’s also a sixth one. Humor. When the knowledge of having Asperger’s was still pretty new to me (I’ve known for a about four months), I called my sister, laughing hysterically. Quirky gallows humor to be sure. That day I had gone to a public restroom and the only stall available was a Handicap stall and I used it without guilt. “Before I had Asperger’s,” I recounted to her, “I would never have used a Handicap stall. But now that I have it, I do!”

Loving Things

LAST YEAR, SOME OF THE LADIES IN MY FAMILY CAME TO my house for an intervention of sorts. My craft room had become the receptacle for all the stuff I hadn’t had the heart to sort through over the years. It was a 12-foot by 12-foot landfill of memories and chaos. I was on the cusp of turning fifty years old and my mother (Jeanie), my sister (Pixel), and my sister-in-law (Asa) came for several sessions of sorting, shoveling, and destruction.

Pixel told me it was an intervention. “But I don’t need an actual intervention,” I argued; “I am ready to clean out that room—so it’s just help, not an intervention.” Still, she guarded me as she and the others poked things in my face just long enough for me to decide which pile to put the things. They forced a quick decision because they feared that otherwise, the job would take forever or get derailed. Pixel moved quickly because, as she said, “You make attachments to things.”

The room was such a mess because it had never not been a mess. I got divorced in 2008 for the second time and I moved to this house. Anything that was too painful to go through, I put in the craft room. This included old photographs (which I still haven’t sorted through); craft materials I used to use when I had my design business; and computers and back-up drives with clients’ Web sites and graphics on them. When I got divorced, I didn’t have the heart to continue the business. Of course this was made easier by the downturn in the rubber stamping and scrapbooking industry at the end of 2007 (boutique craft stores that had been my wholesale customers were going out of business left and right). Afterwards, just sitting at the computer I had used during that marriage was painful.

After seven years I really was ready to go through that old stuff and get the room organized; I just needed a spark to get me started, then the aid of other people’s energy, some vicarious get-up-and-go. In the past five years or so, I have had issues with low psychological energy. I blamed perimenopause (this was a year ago, before I had Asperger’s Syndrome).
🙂

It’s been a year since the intervention that saved me from becoming a hoarder and—being a person who analyzes and reanalyzed old thoughts—I’ve thought a lot about whether I make attachments with things or not. Yesterday I found a small plastic box that used to house a pair of mini mag lights. It is the size of a small pencil box and that’s how I used it for the seven years it took me to get my four-year degree. When it turned up out of the blue, my first thought was, “My old friend!” I feel the same about the pair of ear plugs that went into that black case for when I needed to block out noise during classes or during exams. Somehow they got separated from the little black box and I feel a bit of separation anxiety.

So I would have to say Pixel was right.

I Don’t Look Autistic

I remember many years ago hearing about someone who had “walking pneumonia” which, like it sounds, often goes unnoticed and undiagnosed. Asperger’s Syndrome or “high functioning autism” has the same tendency, especially in females, where it manifests itself differently from its expression in males.

As a fifty-year-old woman who has just discovered she is autistic, I am a fine example of one who has been walking around in my own quirky world–for decades–ignorant of my own brain differences. I don’t look autistic, which is probably one reason I couldn’t even see it in myself!

This blog is about Asperger’s as “walking autism” and it’s also about my process of walking out autism day to day. Think of “walking” as both an adjective and a verb.