I now have a diagnostic mental health label. Hooray for me.
I don’t doubt the label is correct. It almost certainly is. It’s just that I’m a little angry that something I knew about myself, about my own strengths and weaknesses, had to have a label applied to it just to be honored. It was necessary, and I can even understand intellectually why it was necessary. But the fact is that I felt compelled to seek a formal diagnosis when I don’t really feel disabled.
Mostly, I’m frustrated that it should matter so much in my situation.
We’re a society obsessed with labels. We group people by every category and attribute imaginable, then set up systems so accessing services and protections depends on these labels. Want to be protected from discrimination? You had better be labeled in one of the ‘protected classes’ of the applicable statute. Want special educational services? Better be labeled with a qualifying disability.
Diagnostic labels can be incredibly helpful. They can foster understanding, direct treatment or guide rehabilitation. But none of those things is really the case with me. In my case, the diagnosis is strictly to allow me access to the protections of the Americans with Disabilities Act of 1990 as amended.
I have the syndrome soon to be formerly known as Asperger’s. I thought I’d likely be classified under the new Social Communication Disorder come May, which as its name suggests focuses primarily on the interpersonal symptoms. I thought this because I don’t recognize in myself the other ‘symptoms’. But after formal diagnostic screening, the psychiatrist determined that I will fall under the broader Autism Spectrum Disorder umbrella.
A little surprising especially since, as I’ve said, I never considered myself to have a disability. I just always felt like I belonged on Rudolph’s Island of Misfit Toys (I have always identified with those toys, even from childhood).
I don’t, for example, have any pronounced area of interest as is common in Asperger’s. I have learned, however, that this is less common in women than men.
I have a number of what I’ve always call nervous habits – things I do to soothe myself and sounds I make that I find comforting. But these are smaller motions. I had always thought of Asperger “stims” as larger, more pronounced things. It turns out during my diagnostic testing, however, that the psychometrician (a new word I learned in this process) identified several qualifying behaviors. I was surprised, but she’s the expert.
It also turns out that my myriad sensory issues are also a qualifying factor, as is my love for producing clicking/rattling sounds with objects around me (this one can drive my otherwise tolerant family a little nuts). And finally, I’ve learned that my mortifying tendency to melt down into tears when overwhelmed, even in public, is common (though far from universal) in women diagnosed with Asperger’s.
Of course Asperger’s disappears in May. Here’s how a writer in the New Zealand Journal described the upcoming changes to the diagnostic criteria:
Asperger’s syndrome turns out to have been, in many cases, a fancy name to describe people who are rude and can’t be bothered to change their ways.
I’m not sure how I feel about the diagnostic change. I haven’t given it much study, since I never thought it would really matter to me. On the one hand, the difference between a diagnosis Asperger’s Syndrome and Autism apparently hinged primarily on early childhood verbal skills which like everything else with this disorder apparently range on a spectrum. So there was no real difference in adulthood between a person diagnosed with Asperger’s Syndrome and a person with high-functioning (hate that term) Autism who developed their verbal skills a little later. So score one for ‘single diagnosis’.
On the other hand, there is a significant difference between someone with mild symptoms like me and what most folks think of as ‘Autism’. Say to someone who knows me, especially in person, ‘she has Asperger’s Syndrome’ and they’re likely to say ‘I can see that’. Say ‘She has Autism’ and the reaction is likely to be ‘Say what? No way!’ ‘Autism Spectrum Disorder’ is such a broad category now that it really doesn’t tell you much.
But I digress…
I don’t mean to be rude, heaven knows, or anti-social. But I am: I’m socially awkward, never knowing what to say, not realizing I’m interrupting or dominating the conversation, unable to read peoples faces or understand their moods. I’m much better now than I was when I was younger; I’ve learned a lot of social rules that I follow, but I still can’t read situations and cannot make light chit-chat. A few minutes on the phone with even the those near to me wears me out – and I have no skill at tactfully ending the conversation. Gotta go is the best I can do.
This may come as something of a surprise to folks who deal with me primarily on line. The internet levels the playing field with regard to social communication: Here, no-one can use body language, facial expression and tone of voice as guides. Here, I have time to think of something appropriate to say, and it’s OK to just end the conversation when I haven’t got anything. And honestly, I’m smart and I’m 50. I have had years to learn to be less of a misfit, to act in socially acceptable ways. Other than the fact that I have no friends that I didn’t first get to know on the ‘net (none, zero, even met my husband on the GOS) my social issues aren’t horribly obvious.
So why, then, would I bother with a diagnosis at age 50?
In August 2011 I started a new job. I was a success at my old one, got the work done, kept mostly to myself and communicated with civility and professionalism when necessary. That’s all they expected from me socially.
At my new position, I’m still great at the actual job. What I didn’t learn until after I started is that they are quite a touchy-feely group, with a heavy emphasis on personal relationship building. Although my job requires no customer contact and I hadn’t had any run-ins with anyone, it didn’t take long for me to get feedback that I wasn’t being seen as ‘nice’. “Oh, dear heavens,” I thought. “What have I done? Who have I offended?”
No-one, it turns out. I just stink at touchy-feely. I was being seen as standoffish and unsociable. Not that I was ‘un-nice’, just that I wasn’t friendly and social enough.
I’ve been working with my manager for a year, addressing specific behaviors that I can change – in other words, tell me the unspoken rules that I’m breaking and I’ll do my best to follow them. But if my core social abilities haven’t developed in 50 years, I doubt they’re going to now. And the stress of all this has brought what I always called my nervous tics to full flower. I twirl my ring on a loop of my thumb and middle finger (I love the motion and the rattling sound it makes; if I’m not paying attention I’ll raise my hand and do it by my ear) or rub my fingers on my thumb nail (something about that smooth feeling soothes me – when I’m alone I’ll rub my thumb nail along my upper lip).
So the more I try, the ‘odder’ I get. I get it. I’m a social misfit. I’ve always been a social misfit. I don’t even care – I just want to be left alone about it.
Enter the ADA. With my handy-dandy new label affixed, I am in a position to ask my employer to accommodate my social limitations as long as they don’t negatively impact my performance (which she has acknowledged that they don’t). In other words, I can get her to back off with the relationship-building developmental goals and the constant stress on that issue.
My symptoms are at the milder end of the spectrum, obviously, and I don’t tend to stand out in a group (actually, I try to avoid standing in a group at all, I get sensory overload so very easily). Instead, I melt into a corner. So there’s the source of my resentment: why do I need a label to just let it be OK for me to be me?