So, tonight’s the start of a 2-session process I’ve been interested in for 18 years, and have wanted for the past 8 years. Due to financial and assorted health and time commitment limits, I haven’t been able to really dig into getting an assessment for Aspergers / autism. My first go-round with trying to get an official diagnosis fell flat, and it was devastating for me. So, in classic “Aspie MacGuyver” fashion, I just took matters into my own hands and handled them differently than I expected.
It’s literally felt like I’ve been a ship in a raging storm, many times in my life. And over the years, I’ve really struggled with my Aspie issues. When I started getting a clue about them in 1998, things started to improve a bit. I stopped trying to do jobs that didn’t work for me — like telemarketing, which was a horror, I can assure you. I put my focus on my narrow interests, instead of constantly trying to push myself out of my “comfort zone”, like everyone insisted I do. I also consciously did things like stimming, spinning, rocking, when I was “whacked out”. I made other accommodations for myself that really helped me — and had I not understood the Aspie piece of my life, I would have been in much rougher shape, I’m sure.
I’ve been lucky to find help from unwitting professionals over the years. I’ve worked with other clinicians who have either never approached the autism piece of things, or who outright refused to see what was going on with me. I was told I couldn’t be autistic, because I was too empathetic, that I had “Theory of Mind”, that I made eye contact. I was told that my problems weren’t inborn or neurological in nature, but rather the product of poor habits of thought. Before you get worked up about that (I was, for a while), you should realize that I managed to get help from those folks in spite of their ignorance — maybe even because of it.
In fact, I think the reason I’ve really improved since 2008, is because my main clinician didn’t actually make a point of addressing Aspergers, as he understood it (he didn’t). We worked on things like my executive function, my impulsiveness, sorting out my unhealthy lifestyle habits (changing my diet, exercise every day, and getting enough sleep). We also worked on ways for me to get less overwhelmed — and feel less bad about the times when I did get overwhelmed, so I could think clearly about how to approach things next time. It all helped immensely.
Plus, while my clinician was working on my obvious/mainstreamed cognitive/behavioral issues, I was working on my conversational skills, my pacing, learning how to have an extended, relaxed conversation with another living, breathing person, instead of checking out a few minutes into an exchange and losing my way, and then making something up about what I thought happened… and withdrawing from the rest of the world entirely.
The result was that I emerged from 8 years of weekly rehab with the kinds of skills and changes that I needed, specific to my own Aspie situation. And to be quite honest, I seriously doubt that I could have gotten that level of help, had I approached my situation specifically as an Aspie, addressing autistic concerns. There is just way too much confusion and misinformation about what autism is, for the current modes of assistance to be much help to me at all. I base this on getting involved with a local Aspergers/Autism organization that has done some great work, but still doesn’t quite get it. And they’ve been doing their thing for over 20 years.
See, the thing with getting help with Aspergers/autism, is that practitioners and clinicians just don’t know A) how to identify us, B) how to understand us, and C) how to help us. So, even if we do get diagnosed, there’s really no guarantee that they’ll be able to effectively help us. In fact, when I thought about it back in 2008 when I was denied acknowledgement by four different (highly trained) clinicians, I decided that it made more sense for me to create my own “rehab” program to get myself to the level of functioning that I wanted to be — and deal with the “troughs” of difficulty I had on a regular basis.
And it worked! Wonderfully. I showed up every week and did the work I needed to get more comfortable in my own skin, to get more competent in my daily life, and do a better job of living the way I want to live rather than just being in constant reaction to everything.
Of course, the clinician had no idea it was all about Aspergers for me. We never talked about it, after that initial discussion, when they glanced at the evidence I’d gathered and brushed it off. We didn’t need to talk about it. In a way, the treatment was very autistic for me — very self-referencing, very self-directed, putting the skills and experience of a trained professional to work in creative ways they may never have guessed at.
And I’m doing so much better now, than I was in 2008, when all the world was melting and collapsing around me.
So, why do I need an Aspergers assessment? What purpose would it serve, when I’m effectively managing my life, I’m so much more aware, and I fully accept my identity on the spectrum?
I think for me, it’s a sort of closure of that one last little gap of questioning. Just getting someone to hear my side of things, and then to validate / invalidate my beliefs, is the point. There’s always a chance that I could be completely wrong about this, and it’s really another set of issues, entirely. But damn’ if just about all the criteria on just about every test I’ve ever taken, don’t hit home for me on an instant, visceral level.
Plus, other people tell me I’m a total Aspie, in one way or another, so I’m not the only one with the bright idea.
This is a way for me to also put that piece of the constant argument about Who-Is and Who-Isn’t to rest, in my case. This does not mean I’ll become one of the orthodox you’re-only-autistic-if-you’ve-been-diagnosed proponents. If anything, I’ll become even more vocal about the importance of recognizing self-diagnosis — or self-identification. Because it’s so, so essential for us and our pattern-seeking brains to have that meta-pattern to organize by. It is literally a critical element necessary for us to live our lives effectively. Until you have that meta-pattern to guide yourself by, to keep in mind, to orient yourself, it’s like you’re trying to steer your ship through uncharted waters, and your compass doesn’t work.
In many ways, the neurotypical / non-autistic world’s standards are like a massive magnet sitting on the deck of your ship as you’re sailing through stormy seas, throwing off the compass and telling you that True North is in the southeast somewhere… or maybe it’s the southwest… or north-by-northwest. Or whatever. The needle keeps jumping all over the place while the seas are hurling and roiling beneath you. You can’t friggin’ tell where you are, or where you need to go… and it’s awful. Just awful. You can’t even tell how to get out of the storm. You’re just stuck there, floundering, potentially foundering.
And that sucks.
But having an understanding of yourself as a resident of the autism spectrum places you in your own life. It pushes the NT “magnet” off the deck of your ship and sends it to the bottom of your own personal sea, where it can’t hurt you anymore. Having an understanding of yourself, your capabilities, and your limitations, is all essential to being able to orient yourself in life, so you can avoid those storms in the first place.
At least, that’s how it’s been with me.
I’ll write more about that later. For now, I need to get back to preparing for my assessment, refreshing my memory about how things were for me when I was little, when I was a pre-teen, and beyond. There’s a lot I try not to think about, but this is one of those days when I really do need to think about it.
So, I’m being gentle with myself, I’m getting extra sleep, and if all goes well, I’ll be able to represent myself accurately tonight, and start this final leg in a process that’s taken way too long and has been way more painful and confusing that it needed to be.
Things are improving. But it takes time. It just takes time.