This is a long post – I have no idea how long it will take for you to read it, but I couldn’t do this proper justice without a full “download”. I hope you find it useful.
If there’s any question in my mind that I’m not on the autistic spectrum, just looking at the pattern of my interests over the years, puts my suspicions to rest.
I wrote earlier about my hyper-focused interests when I was a kid. And during my morning warm-up — a bit of exercise, a bit of meditation, a bit of Twitter — I thought about how even my interest in Aspergers and Autism and ASD have fluctuated wildly over the years. And indeed, the fact that I wasn’t focused AT ALL on my spectrumy life for, oh, about 8 years, seems now like glaringly obvious evidence that I’m well within the limits for ASD.
Almost 10 years ago, my wife was diagnosed with diabetes, and she had a handful of other complications which necessitated visits to specialists and clinics. It was intensely nerve-wracking, because she’s got a whopping panic-anxiety condition, and she comes from a family with a terrible history of medical experience. Several members of her family have died prematurely after they took questionable combinations of medications — one of which combinations was actually the subject of a class-action wrongful-death lawsuit. Her family was so devastated by that one particular death, that they couldn’t muster the energy to join the class action.
But they could have.
Anyway, dealing with my wife’s diabetes & complications and all the specialists was a crash-course in medical survival skills. One of her doctors was so inattentive that he missed a major diagnosis, at first downplaying the severity of her issues, so that she missed a critical window of time within which to do necessary rehab. But he didn’t even cop to his “miss” until weeks later, and then the early-intervention chance was passed.
On top of it, he was prescribing medication that was clearly contra-indicated for her mix of conditions. I brought it up — in my ever-so-Aspie matter-of-fact, self-educated way — and he got pissed off. I tried to be deferent and polite to him, showing him professional courtesy, but I failed on that count. I mean, he was actually endangering her life, and he didn’t seem to notice.
After I did my little spiel about exploring other medication options, he literally got up, walked across the room, rifled through some papers, and tossed a handful of different medication pamphlets at me. “Then you pick her medication!” he said, in a huff.
Oh, Lord have mercy… I’m not sure if he expected me to say, “Oh, sorry Doctor! I didn’t mean to upset you! No, no – it’s fine, we’ll stay with your shitty-ass choice of meds…” or what. But I took him at his word, took the pamphlets and writeups home with me. I did some more research at drugs.com and other medical / pharma sites and a bunch of patient forums. And after days and days of careful study and a whole lot of sweating bullets, I deduced that a certain medication was more appropriate.
A couple of weeks later, we went back and discussed it, and he agreed.
So, there it was.
My wife has been on that med for over 8 years, now, and it’s actually working really well for her. I don’t recommend that anybody else do this, but that’s what happened to me, and somehow we averted disaster. And when my wife finally worked up the courage to ditch that old quack (who was more interested in his next European vacation than tending to my wife), the new specialist approved of the med.
Interestingly, the new specialist tried to re-prescribe the old med we’d gotten off — even though it said clearly on all the labeling, as well as within all the literature, that it was contraindicated for exactly one of the conditions my wife had — and if anything, it could worsen that condition.
Oh, well. At least we managed to talk him out of it — but not before hearing that he’d often prescribed that same drug to many, many patients just like my wife. And how I feel for them.
Anyway, around the time that I was helping my wife get back on her feet, I was spending a ton of time online, researching issues. I cut back my hours at work (I was on a contract at a local tech startup, and they were really accommodating and helpful). And I could be found, most hours of most days, sitting in front of the computer, researching diabetes and the other conditions my wife was dealing with.
Of course, the intense stress of her hospitalization, along with the high-stakes interactions with medical professionals, and the feeling that I was falling farther and farther behind, really did a number on me. I also wasn’t exercising as much as I should have. I’m not sure I was exercising at all. Plus, my agoraphobia was kicking back in, after having abated for about 15 years. I was highly stressed, I was always on alert. And I started to have more physical issues cropping up, that had been dormant for many years.
My intense, unremitting, continually switched-on fight-flight response kicked a lot of old issues back into gear. Chronic pain. And sensory issues. Oh, how I had sensory issues. Holy crap — I felt sometimes like just drawing breath was giving me a beating. I was also having a lot of problems with vertigo, keeping tabs on everything, and learning a whole new way of cooking and eating and living, due to my wife’s change in health.
Nothing was making sense. I was having real problems dealing with anything and everything. And when my wife fell and injured her lower back, instead of helping her, I walked over to her where she lay crying, looked her up and down, and walked away in disgust, leaving her struggling at the end of our driveway to get herself up and get back safely away from the road.
I am intensely not-proud of that reaction.
It told me something was really, really wrong with me. It was completely unlike me. I’d just reached the absolute limits of my ability to cope.
And it sent me out into the wilds to look for help.
I just wasn’t dealing well with anything. And the one person — the love of my life — who I should have been helping… well, I’d walked away to leave her to God-knows-what fate.
Yeah, I needed help. So, I started out looking.
I found a therapist. She came highly recommended by a close friend of ours, who’d been helping me with getting my wife back on her feet. And she had the best of intentions. I made some okay progress with her, but I mostly just wanted someone to talk to about my daily life, who would sit still and not interrupt me while I rambled on and on about everything. That everything could include technology, politics, ethnology, physics, geometry, personal finance… recent medical research breakthroughs, the weather, travels I’d taken in the course of my life… you know, the usual Aspie rambles that NT folks have trouble tolerating.
Now, one of the things I wanted to really explore, was the whole Aspergers thing I was re-discovering. While I was researching health issues — my wife’s condition(s) and my own sensory issues — I was also re-discovered the ever-enlarging body of writing and research on Autism and Aspergers. Like 10 years before, when I’d come across the nascent ASD exploratory field, I once again found this amazingly apropos information that seemed to apply so well to me. Questions I didn’t even dare ask, were answered. And I was elated. Because at I’d (re)found pieces of the self that had fragmented in the face of social bias and ignorance. And I wanted to put those pieces together.
So, I compiled all these records and accounts of how and where and why I — and half my family — appeared to be smack-dab on the autistic spectrum. I thought for sure this therapist would understand, because her own partner was a prototypical autie — he was even more classically autistic than I.
But I was rebuffed. And I was told, in no uncertain terms, that the “man child” in question (her words, not mine) was just severely ADHD, and that was his issue.
Oh, please. I’d met the man, and he displayed just about every single classic behavioral attribute of autism — never, ever made eye contact, avoided rooms full of loud people, talked at length and in exhaustive detail about subjects he cared most about, his gait was … different… and his mannerisms were way more extreme than anything I’d ever seen in the “normal” population.
But this therapist was convinced it was “just” ADHD. And when I told her about my suspicions about being on the spectrum — and handed her the sheaf of papers of detailed substantiating evidence — she just laughed me off. And I learned — a couple of years later when she was retiring — that she’d never even read the papers I’d given her, till she was cleaning out her file drawers and was about to throw them away.
And then, suddenly, she could see what I was talking about. She said I probably had a point. I probably was on the spectrum.
By then, though, that ship had sailed. It was too little, too late.
There was really no support for me around being on the spectrum. My wife got a little freaked out at the idea that I was an Aspie — that panic-anxiety condition wasn’t helping at all. The new therapist I started seeing, who specialized in helping people with executive functioning issues, also told me that I was too socially successful (ha!) to be autistic. He also told me I didn’t show the classic signs of Aspergers — and he’d worked with boys who had it. Well, of course I didn’t — I knew how to cover all that up!
In retrospect, maybe I should have dropped him and kept looking. But I was pretty desperate, and he was really good at the whole executive functioning rehab business, so I stuck with him. I figured it was better to focus on a single issue of my behavior problems and solve that, rather than casting too wide a net and getting shot down by people who weren’t current on their research — especially with regard to women on the spectrum.
And that’s how I stopped focusing on my Aspergers. I veered away from my ASD research and explorations, where I couldn’t get any traction, and I became hyper-focused on the areas where I could get some help. In classic Aspie fashion, I turned my attention to the issues that I could discuss with healthcare providers, that wouldn’t get me all kinds of attitude, ridicule, and dismissal in the process, and my wider exploration of being on the spectrum fell by the wayside.
I’ve been tempted to believe, over the past years, that my diminished focus on ASD means that it’s not that big of a deal to me, and it doesn’t actually apply. Au contraire! If anything, it means that I am just as much of an Aspie as ever, since my focus on my other issues effectively blinkered my attention and kept it zeroed-in on ONLY the subjects I was exploring.
Also, it’s a little embarrassing to admit, but I also became hyper-focused on my therapist — not in a creepy stalker kind of way, and not in a romantic way (ew!), but in an academic sort of way. I researched his education, his professional affiliations, the boards and organizations he’d served on, the students he’d mentored. I looked up his address, based on some passing info he’d given me, and I studied his house on Google Street View, making note of the house type, size, and what it looked out at, across the street. I looked up his wife, his kids, and the other people he’d worked with. I composed a pretty comprehensive picture of who he was and what made him “tick”. Because I had to. I was lost without that kind of information — because sure as sh*t, I was lost, when it came to figuring out stuff just from talking to people.
If he’d known just how much I knew about him, he probably would have dropped me and gotten a restraining order. And I wouldn’t have blamed him. It was almost creepy, how much I knew. But I meant him no harm. I just needed to understand him better… his professional orientation, his attitudes, his perspectives. I needed to know how to interact with him, and if I knew about his milieu, his history, and what added meaning and purpose to his life.
So, I never said anything about it. And I never let on, just how much I knew about him, his home, his family, and what he did in his career outside his office.
A handful of hyper-focused fixations took the place of my Aspie explorations. The EF rehab therapy that I did each week was the center of my life. I divide up my weeks by how-long-since-I-last-saw-my-therapist… and how-long-till-I-will-next-see-my-therapist. I thought about my therapeutic work constantly. Almost obsessively. I researched online extensively. I looked at countless pictures of brains and nervous systems to better understand both executive function and the autonomic nervous system. I spent hours looking at my own MRIs, when I was checked for epileptic activity. I was so focused, my wife got weirded out and asked my therapist if that was normal. He got a little worried, I think.
So, I stopped doing it all publicly. I learned that lesson quick. Especially considering that this therapist was fond of pharmacological “solutions” — and there was NO way I was going on meds for a set of conditions that I knew deep down he didn’t fully understand. Even when my attention was turned away from ASD, I still knew that any pharmacological remedy was a half-measure, so long as my Aspergers went unacknowledged and wasn’t factored in.
This went on for years. About 8 years, if my math is correct. I couldn’t get help with my ASD issues, so I kept intensely focused on what I could get help with. And it actually helped me a great deal. My meltdowns ceased. I mean, just stopped. After years and years of hours-long collapses into uncontrollable weeping (and a bit of minor, non-scarring self-harm), my last meltdown happened, probably around 2010. I still have those bouts of losing it, and there are times when the crying starts and won’t stop, but it’s been so long since I last had a full-blown meltdown, sometimes I forget I ever did.
The thing that amazes me, is that in all those years, the very traits that marked me clearly as a woman with Aspergers, were making it possible to completely ignore that side of me. Intense hyper-focus to the exclusion of all else. Obsession with circumscribed subjects — and people. Sensory issues that were off the charts, at times. A penchant at talking for long stretches about things that fascinated me. Short term memory problems. Long-term memory excellence. A history of botched social interactions (one of which resulted in me being stalked for several years, and another which almost got me sold into white slavery – no joke). The constant feeling (which I expressed many times) of not feeling like I was keeping up, that I was missing things, and people made no sense to me.
To someone who knows what they’re looking at, it’s all classic Aspie woman stuff. But I was so very, very good at covering it up, at hiding it when there was social repercussions, that I was under the radar for years. I mean years. And nobody got it.
Except my wife. I think she gradually got it — especially after we watched Mozart and the Whale. But again, she’s got no support in dealing with it, and it triggers her panic-anxiety, so we never really talk about it.
Unless I mention in passing that so-and-so seems awfully Aspie to me.
Then she just nods. Because she knows.
I’ve been meaning to keep my posts short and sweet, but this one had to go long. Ultimately, the net result is that I’ve dealt with a lot of EF issues, and I’m tons more functional than I was, 8 short years ago. But there’s still this whole wide open Aspie woman world out there that I haven’t yet fully explored. Thankfully, the interwebs are absolutely lighting up with emerging information and accounts about women — grown women — with Autism and Aspergers, so the fields is a heck of a lot more friendly (and interesting) to me than it was, back in 2008. So, I have a direction to go in.
Plus, my former therapist has moved on to another position in another state, so I terminated with him. And I’ve got a new therapist, who actually works with autistic kids. They’re kids, though. I dunno if she works with any autistic adults. But now she is, whether she knows it or not.
And the hyper-focus I turned on my EF issues, I’m now turning to my Aspergers. Being on the spectrum. Being high-functioning in some areas, low-functioning in others.
Because I have to. I’ve been covering up so long, I feel like I’ve been losing myself along the way. My new therapist keeps pressing me to just be myself, and think about my own needs and how to meet them. Ha! If she only knew how much of my life depends on me NOT doing that.
Well, she may just find out. She may find out, indeed.
‘Cause now my focus is turned to where it never could be before — but now it can’t help but be.
On the autistic spectrum.
No matter what anyone else has to say about it.