Peeling the onion: getting an autism diagnosis late in life, part one of many.

I gave notice at work yesterday with the intent to retire from full-time waged work. This leaves me a lot freer to talk about personal matters on this blog; I won’t have to worry about some prospective employer finding it and using it as a reason not to hire me.

Maybe I’ll write about retirement some other time: there certainly will be pictures, since I plan to travel. Today I’m going to start writing about my recent assessment for autism, and how I’m settling (or not) into the fact that apparently I am one of the autism “collective,” as Tania Marshall, author of I Am AspienGirl and I Am AspienWoman, puts it. I’m 53 years old and just got assessed with autism! (Now what ….? )

Doubt? Of course I have it; it’s a standard operating feature of my system. And I think I’ve always had it. I was assessed in the middle of April, so the diagnosis is new… and was a long time coming, since I’d suspected for several years before that that I was on the spectrum. So, doubt. But as the weeks go on, I remember things about how I was as a kid and how things have (or haven’t) changed.

Case in point: motor skills. I just reread Temple Grandin’s The Autistic Brain. While I think her approach isn’t always helpful in terms of the need to accept certain limitations, she writes about difficulty with certain physical activities, and that jogged my memory. It was helpful for me to remember just how much my lack of motor skills impeded me as a kid and young adult:

  1. I couldn’t do a lot of “simple” things like cartwheels, pullups, hula hooping, throwing a ball in the right direction. It was a frequent source of shame, because I … didn’t know why.
  2. I was always winded and out of shape, consistently last to finish running laps consistently. I was a bit overweight but not enough to explain the exhaustion and difficulty of doing a few laps.
  3. I had a hard time with penmanship, tying shoes, etc.
  4. As an adult, I took voice lessons, but I could never coordinate all the moving parts well enough to progress much.

One exception: learning and playing piano. I was a decent pianist by the time I was in high school, but I was never that interested in playing, sadly: I think the classical repertoire and the fact that (as always) I was playing by myself left me cold. I played harpsichord in a trio one semester and that was more fun.

I also learned to ride a bike, which in retrospect is miraculous. But it was a trial … at least until my parents took off the training wheels, and then I was fine. I have the same problem with kayaks with rudders: too many moving parts to control, let me do it all myself.

Out of fear of being fat I started jogging in ninth grade, and for whatever reason that changed things a little bit for me, for the better. I started lifting weights too, again, not to the extent that a lot of people do. Today, I have an excellent sense of balance and of my body in any physical space, to the point where if it’s “off” due to something like vertigo, I can pick up even minute differences. So I’ve acquired a good sense of myself in my body over the years, but it wasn’t always that way.

But you know what? Even though I almost never fall or lose my balance, and even though I lift weights and can ride a bike, I STILL have trouble with motor stuff.

  1. Handiwork around the house (anything involving a drill, for example) is likely to send me into a meltdown. I just hate it and outsource it whenever I can.
  2. Mountain biking: even out-of-shape people leave me in their dust because I am so terrified of rocks, ravines, etc. I can do a relatively flat trail with some curves, small rocks, etc. but if I see that there’s ANY real danger from taking a fall, I’ll walk the bike. The sensory craving part of me loves the thrill of going around curves fast, though. So it’s the sport I love to hate.
  3. My handwriting is absolutely terrible: it’s degenerated with time and anxiety.

So I still have some profound limitations. But I live my life: I’m able to live independently, and my flavor of autism has led to lucrative long-term employment. We’ll talk about the masking necessary for autists to do full-time waged work some other time, too.

Reflecting on these limitations and changes has been a useful exercise for me:  it’s helping me to see myself as absolutely a part of the autism collective. Sharing with and listening to other autists is immensely helpful: it was another non-man autist in tech, @heartpunkk, whose power of example and advocacy helped lead me to assessment.

By the way, if you’re looking for an assessment and you are Aussie-based or if certification for US disability is not of great importance to you: Tania Marshall is a clinical and research psychologist who specializes in studying and working with non-men with autism. She does thorough, objective assessments for people either in person or over Skype, and her fee is far less than what you would pay in the good old US of A. I highly recommend working with her.





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