For the past several days, I’ve been wrapped up in prepping for and participating in an assessment to see whether I’m on the autism spectrum. I’m exhausted, frankly. It was an arduous process for me, that involved collecting information from my past, digging up old school pictures (which prompted a lot of bittersweet memories), asking family members to write up descriptions of my personality, including my strengths and challenges, and (perhaps most difficult of all) composing a list of all my strengths, gifts, talents, and abilities. It was a lot of work over the weekend, and yesterday was a whirlwind of activity — on a few less hours of restful sleep than I’m used to getting.
It was totally worth it, though. In the end, I haven’t gotten a formal-formal diagnosis (that letter is forthcoming at a later date), but it was pretty much a foregone conclusion that I’m smack dab in the middle of the spectrum. I showed so many signs and indications — even a bunch that I had not realized were there, which showed up on my old school pictures and my report cards from first grade. It was quite the experience. And even if I came away with a result that indicated I’m not actually on the autism spectrum, that would have been fine. Because it would have been substantiated in fact, rather than ignorance and bias.
That fact piece is critical to me. No surprises there 😉 I’ve been 98.738% convinced that I’m on the spectrum since February of 1998, but I’ve never been able to get official confirmation of that from a trained professional. I don’t really feel that it’s essential for me to get a diagnosis, in order to live my life effectively, but there’s always been that nagging thought in the back of my mind. And really, the whole reason why I couldn’t get a diagnosis was because of money, time, and expertise. No one I investigated could meet me in the middle on any of those. So, I’d just given up on the idea — bagged it, because the costs were outweighing the benefits for me.
That changed in the past six months. I got involved in a local AS organization, and I actually got some support around diagnostic options. I went down a couple of unproductive paths, before I finally connected with someone who really worked well for me, in terms of time, money, and expertise.
I’m not going to name any names, because everybody needs to find their own way, and I don’t want to point anyone in any certain direction. It’s a good exercise, in any case, to take the initiative to get that diagnosis — if, in fact, you feel you need one. There are people you can reach out to personally to get insights and pointers. That’s what I did. So, you just have to look around, be creative. Keep pressing on, till you get what you need.
That’s what I did, and that’s what I got. Mission accomplished. And after years of telling myself that I didn’t need an autism diagnosis to live my life fully, it feels a little surreal to be one step closer to having that “certification”, if you will.
So, what changed my mind? Well, first and foremost, I found someone who could work with me in terms of time, money, and experience. I wasn’t just flinging darts wildly into the dark, hoping to hit the board — which might or might not be there. The person I worked with actually knows about women on the autism spectrum. And her costs were less than half of the charges of one counselor I was going to work with. AND — most importantly — she did it in two different 2-hour sessions at a time I could actually accommodate without having to take time off work.
On top of that, I felt I needed an autism assessment for the following reasons:
- I needed an autism-specific conversation with a professional. I’m 51 years old, and I’ve been living with what I consider “spectrum-y” experiences my entire life. I wanted to talk to someone freely about those things in the context of the actual autism spectrum. I’ve usually talked about them in more general terms — which opened the door to all sorts of other “interesting” diagnoses and assessments. Everything from being shut down emotionally, to being unwilling to engage, to having been mistreated by my parents, to the possibility of repressed trauma that I haven’t been able to face, out of fear and anxiety. I’ve wasted so much time, going down those roads — or fighting people who wanted to take me down those roads — when I could have been just living my life on my own terms.
- I wanted independent corroboration of my beliefs. It’s just good science. And it’s good practice for me, because I can spin up all kinds of interesting scenarios in my head, and despite my honest-to-a-fault inquisitive nature, I can get clued into a certain piece of things that skews my vision otherwise.
- I wanted to finish up the quest I started in 2008. I don’t think I ever got over the repeated dismissal of my suspicions, and I needed to have someone with actual experience with autistic women to weigh in on my findings and beliefs. I was actually fine with the idea that I’m not completely autistic, that it might be something else — if that’s actually the truth.
- I’d like to have that little validation “in my back pocket”. So, when I discuss my experiences and people start to take exception to my statements about autism and the autistic experience (as they will — they always will), I can say, “Dude, like, I’m #ActuallyAutistic. Back off.” Not that it’s going to change anybody’s attitude about my beliefs and approach. They’ll find another way to discredit me — like say I didn’t get the right kind of diagnosis, or that I’m using the wrong criteria, or whatever. But at least (if the assessment comes back positive) I’ll have this additional thing in my favor. It’s like getting my frequent-customer ticket punched. It may not entitle me to a free cup of coffee, but at least it’s a step in that sort of direction.
- It may come in handy later, if my life gets unmanageable. If I ever get into trouble with my cognitive-behavioral repertoire, and I need to see additional help, a positive autism assessment can help me have the conversations I need to have with providers who can be of more help. Given that autism awareness within the #ActuallyAutistic population can serve to help us mitigate, even bypass, the troubles that usher us into the Klaxon-level danger zone, I think it’s actually less likely that I’ll need advanced help, once I have a formal diagnosis on paper. But I have to think of my advanced years. There may indeed come a time when my needs outstrip my own capacity to serve those needs, and having something on record that places me in a recognized more-help-needed group, is a kind of insurance against the awful things I see happening to people in their later years.
So, those are my Top Five Reasons for getting assessed. I’ll reiterate that an autism assessment by a professional is NOT something I feel I need, in order to live my life fully and successfully manage my issues. But it is something that could come in handy later. And with any luck, the next time I approach a medical or doctorate-level clinician about Aspie-style issues, I’ll have an official diagnosis to present to them, rather than a stack of printouts of criteria I meet, test results from the past 10 years, and a level of familiarity with autism and Aspergers that far outstrips theirs and makes them uncomfortable, intimidated, and downright unhelpful.
Anyway, it’s a plan. And I’m all about my plans. I can rest now… just let it sink in… and stop having all those pointless, exhausting arguments with other people about whether my spot on the autism spectrum is imaginary or real.
For the record, I will continue to vociferously defend the validity of self-diagnosis, I will never, ever insist that another person (especially women) be formally diagnosed by a board-certified medical professional or Ph.D clinician in order to belong to the autism community. I will not cast aspersions and doubts upon others’ perspectives on their autistic lives, because they “lack” a formal diagnosis.
There are too many hurdles in the way of diagnosis, for just anybody to be able to walk out and get a diagnosis. Those hurdles need to be lowered, for sanity to suffuse our discussions. Those hurdles need to disappear, in fact. They need to not even be issues.
But regardless of whether or not hurdles to diagnosis continue to exist, I will continue to write and share and advocate for a wider, more comprehensive understanding of what it means to be autistic in a world that is anything but… a world which wishes we were either completely different, or we didn’t exist at all.
And let’s not forget compassion. That, too. I’ll be advocating for that, as well.