Adjusting to the new normal


It’s been almost three weeks since it was confirmed that I am autistic/have Asperger’s/however I’m going to end up self-identifying. The labeling is still a work in progress. I keep forgetting, and I find myself talking about autism in the third-person outsider way I’ve always done before this. It doesn’t feel natural to say “we” instead of “they” yet, and maybe it never will. Maybe it doesn’t need to.

I’ve told a few people about my not so surprising news here and there. Um, well, I guess I’ve told anyone who regularly reads my blog. But in person, I mean. A few. To mixed results. It’s tiring to have to explain my “sudden” disability. That it is invisible makes it even harder. I’m trying to keep a positive outlook on these interactions, and am working on using them as opportunities for me to get more comfortable with my own understanding of disability as well as highlighting the teachable moments for others around their expectations of what autism can look like, sound like, be like. The hardest part of this is feeling like I’m in a position where I have to justify this label, and explain how it fits. It was suggested to me that I get a second opinion. After having had more than a dozen medical and psychiatric opinions over the last thirty years, can’t I just feel relieved that something finally fits?

I have thought I was crazy my entire life. And maybe I still am crazy. I’ll likely always have a good chunk of anxiety, and I don’t expect my depression to disappear overnight (if at all). Sixty-five percent of folks on the autism spectrum will experience issues like anxiety and depression, so that seems pretty par for the course. But what of the rest of it? I was diagnosed with a dissociative disorder, once upon a time. When I’m profoundly overwhelmed, it’s common for me to go nonverbal and shut down entirely for a bit to regroup. With this new understanding of autism in me, that behaviour takes on an entirely different, non-pathologized context. Shutting down IS coping. It’s not disordered behaviour. It’s not irrational in the face of so much interference in my brain and my inability to process everything simultaneously. It buys me quiet, and time, so that I can search for patterns, for meaning. So I can figure out the important, most pressing pieces, and focus on them when I get everything in the right place in my head again.

It has also been speculated by psychiatric professionals that I may have Borderline Personality Disorder. To qualify for diagnosis, individuals must exhibit 5 of the following characteristics:

1) Frantic efforts to avoid real or imagined abandonment.
2) A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation.
3) Identity disturbance: markedly and persistently unstable self-image or sense of self.
4) Impulsivity in at least two areas that are potentially self-damaging (e.g., promiscuous sex, excessive spending, eating disorders, binge eating, substance abuse, reckless driving).
5) Recurrent suicidal behavior, gestures, threats or self-injuring behavior such as cutting, interfering with the healing of scars or picking at oneself (excoriation) .
6) Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability or anxiety usually lasting a few hours and only rarely more than a few days).
7) Chronic feelings of emptiness
8) Inappropriate anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights).
9) Transient, stress-related paranoid ideation, delusions or severe dissociative symptoms

(Bolded items are what I have experienced.)

If I have difficulty communicating on an emotional level, it stands to reason that my interpersonal relationships are often going to look like a giant clusterfuck. Within friendships and intimate relationships, I have always struggled with feelings of isolation and confusion. I also regularly experience fear of looking stupid if I express that I have no idea what someone’s words or behaviours mean.

I have tried to connect with people on a number of levels. While I hate that having multiple sexual partners is pathologized within BPD’s definition, I will admit that my own choices around unemotional sexual connections have been motivated by my need to connect at some level with someone. I know the rules around sex, most of the time, and if there isn’t an emotional component, I’m less likely to look like a freak. (in theory.)

And the cutting? Well. Self-injurious behaviour is pretty common in folks who have communication difficulties. Add in the sensory dysregulation I regularly feel, and you get someone whose skin literally feels like it’s too tight, but can’t explain what that means. Cutting can be regulating, and can explain frustration and pain that I can’t always put into words.

I’ve already addressed the dissociation, and the emptiness? Well, that crosses over into depression territory.

This is making me wonder, as I type this all out: is there a connection to the disproportionate number of women who have been labeled with BPD, and the under-representation of women on the autism spectrum? It’s sadly commonplace for people of a certain age to have been traumatized and mis/labeled by the psychiatric system on the way to finding autism. It’s so easy to believe that the experts know what they’re talking about when they tell you that they know exactly what makes you crazy, but it’s a lot harder for them to step back and see the crazy as part of the bigger picture. I am a very big picture in a pretty small body, and what I call that picture is currently in flux. Maybe it will stay that way. I don’t know. What I do know is that for the first time in my whole life, I’m starting to not feel broken. I’m starting to accept that I’m complicated, that I don’t fit, and that there is no shame in that. I am not crazy for having to tune out when too much is happening, and I’m not stupid for not understanding when people speak to me in ways that are unclear.

All that being said, my own communication impairments will not always be the reason for misunderstandings. My autism (and therefore I) will not be held solely responsible for when shit goes south. I am working hard to be open about my impairments and what helps me function better, and I’m trying my best to listen for meaning and not get trapped in the white noise that often accompanies messages. I can’t accomplish that by myself, though, and I will not let my disability act as a scapegoat for every problem ever.

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1 Comment

  1. seventhvoice said,

    May 13, 2012 at 9:10 am

    Thank you for sharing such an honest post. Yes there is in my view a clear connection between the increased rates of BPD and Bi-Polar disorders diagnosed in women caused by the previous denial of the female AS experience. I’ve been researching this particular area for awhile now and there are significant studies due to be released over the next 6 months that will highlight this connection. You are definitely not alone in thinking as you do. Thank you.


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