Back to Bitch: what the new DSM-V un-diagnosis means to me

Like many adults with Asperger Syndrome, I’ve known more or less my whole life that something was “wrong” with me.

As a child, I flapped my hands, rocked, walked on my toes, spoke like a cartoon character or a college professor on helium, and (with a couple of exceptions) had a lot of trouble making friends or knowing how to behave around other people.

There's, Ah say, there's somethin' ODD about that kid.

When I was 12, I read an article in Reader’s Digest about a family whose daughter was autistic and went, “Oh my god, that’s what it is!” — although I still wasn’t quite sure, since I could speak (a lot…) and go to school and wasn’t as extreme as this kid.

High school and university and the (sometimes kind, sometimes not) interventions of peers and older adults kicked many of my bad Asperger habits to the curb, and instilled more functional new behaviours in me, but the main problems remained: meltdowns, inability to really relate to other people, trouble keeping apartments or jobs or romantic partners.

I was a “cranky bitch” and a loser, according to some. “How can someone so smart do such damn stupid things??” should have been tattooed on my head. Even when I was small-ish, my own adopted family simply referred to me as “The Bitch,” as in “Tell the Bitch that dinner is ready.”

Therapy didn’t help; I lived in a group home as a teenager (calling me “The Bitch” was the least of the injuries my parents inflicted on me, unfortunately), had hours and hours of talk therapy after my father killed himself in 1990, tried Cognitive Behaviour Therapy (accidentally very helpful, as it leans towards intellect rather than emotion), tried it all.

Let me tell you what your problem is....

In secret, I kept reading books on autism — Son Rise, by Barry Neil Kaufman, and books by Temple Grandin and Donna Williams, who both have autism. Almost everything they said made sense for me — except the bit about being verbal, and that I was more or less independent.

Then in 1994 a new term appeared: Asperger’s Syndrome, coined by British autism researcher Dr Uta Frith, who was studying the work of Dr Hans Asperger. Asperger had, in 1944, observed a group of children who had all the “classic” symptoms of autism, as described by Dr Leo Kanner, but who were verbal (“little professors”) and often were able to make good use of their special skills and obsessions in their adult lives.

The penny dropped: I knew.

But I am a stubborn sort, and I suppose I had had enough of therapy at that point; it’s expensive and time-consuming, and I was deeply tired of people telling me who I was or how to “fix” myself. “I do OK,” I assured myself, and so I staggered on, blundering bravely through more short-lived jobs, more failed friendships, more train-wrecks of relationships, more landlord-tenant clashes. I even moved overseas for a couple of years, trying to leave the detritus of my life behind and start fresh, only to discover that “wherever you go, there you are.” I staggered back to Canada again after a couple of years, not quite broken but getting there.

Finally, in 2008, after yet another failed relationship, I hit the wall. Something in me simply shattered and, on the brink of suicide, I took once last chance: my heart in my mouth, I phoned the Asperger’s Society of Ontario and asked to be referred to a specialist.

Life before diagnosis.

Many hours of testing (and a huge chunk of my savings) later, I presented myself again in the specialist’s office for his verdict. I was fully prepared to be told, yet again, that I was simply Not Trying Hard Enough and and sent on my way with a referral to yet another therapist who could teach me how to NOT be such a bitch, and how to use the brains God gave me.

He didn’t mince words: “I’ll get straight to the point,” he said. “You do, in fact, have Asperger’s Syndrome.” To my surprise and horror I couldn’t stop crying. He asked why; I blubbed something along the lines of “Why didn’t anyone ever notice and help me?” and “Oh my god, I’m not actually a stupid fucking failure who doesn’t try hard enough.” I didn’t tell him the third reason, which was “Oh my god, I get to live a bit longer.”

Over the next few months I saw him regularly to try to make some sense of the wreckage (and the intermittent successes) of my life, and to try to map out a way for me to go forward armed with this new knowledge. Ever the cynic, and mindful of the fact that Asperger’s and autism diagnoses are soaring (an unkind ex-friend harrumphed at me “Oh, Asperger’s is such a trendy diagnosis right now!”), I asked him about the diagnosis rate at the centre where he works. He told me that they turn away about 95% of the adults and children they see with no diagnosis at all.

Despite my initial horror, this, too is actually reassuring: he wasn’t just giving me the latest trendy label in order either to gain a new client for himself, or get me to shut up and go away.

There are some people, I guess, who think a diagnosis of any sort of disability is an excuse, a reason to sit back and not take part in life and contribute. I’m not one of them; if I were, I’d have given up trying to relate to people, to work, to share my talents, long ago.

Instead, I think of this diagnosis as “knowing the enemy” and being able to put a “face” on what I’m fighting against, what I will always be fighting. My brain is wired differently; I see things differently than most people, and I will always have trouble doing certain things.

My stars, such an innnnnnterestin' monster! And to think, you've been here all along!

But it doesn’t mean I stop trying — quite the opposite, really. Knowing I have Asperger’s means I now look for jobs that are more suitable to my skill set and my mental makeup: working from home as a writer and a textbook editor suits me beautifully, whereas office work and the endless socializing and cliques and being micromanaged was a disaster for me.

I looked for (and have remained in) an apartment that’s quiet and very private.

I have weeded out some bad friends, kept the ones who respect me, and look much more carefully at new “prospects” in terms of how our interests and tastes mesh.

And I don’t date; that’s the last big frontier for me. It was the “straw that broke the camel’s back” for me in 2008, and I’m not anxious to go there again for the time being.

Anyway, my point is that, all things considered, I am now more OK than I have ever been. One former therapist marvels at me that I have finally “come into my own” and am more relaxed and accepting than she has ever seen me.

I have Asperger’s, and I’m doing all right.

However, there’s now a dark cloud on the horizon for all of us with Asperger’s Syndrome: the experts who put together the Diagnostic and Statistical Manual — the good book of criteria for classifying mental disorders — have decided to delete Asperger’s Syndrome from the upcoming DSM-V and simply lump it in with autism itself, as part of the new “autism spectrum disorder.”

Sorry, you're not autistic enough.

The move is highly controversial among people whose lives are affected by Asperger’s (those of us who have it or know someone who does) for a couple of reasons. First, and most importantly, the new DSM-V de-classification may make it harder for children and adults who are more severely affected by Asperger’s to get any kind of help at all. In Canada (where I live) and in the US, at least, the Asperger’s diagnosis is used by health insurers, researchers, government agencies, and schools to determine someone’s eligibility for things ranging from tutoring to intensive behavioural therapy and interventions. It can mean the difference between functioning and participating in society — and not.

The fear is that someone from one of these agencies will look at a child or adult who has many of the criteria for autism, but who is verbal and (as was the case with me) able to go to school and to work, and say “Well, you’re clearly not autistic enough. No services for you. Good luck in future endeavours!”

Second, and more germane to me personally, the de-classifying of Asperger’s Syndrome removes what can actually be a life-affirming identity for some of us. As I’ve said, I had no idea I had Asperger’s as a kid (although I was put in the gifted classes, which provided a bit of “identity cover” for me, thankfully), but I understand that many Aspergian kids today, and their families, are actually proud of who they are, and — with support and understanding — are on their way to becoming contributing members of society.

For adults, who (like me) are usually recently diagnosed and grew up being outsiders, we are relieved not only to know the “face of the monster”, but to finally belong to a “herd.” Believe me, there is nothing so life-affirming as being told, “You’re not a loser/underachiever/bitch/asshole/weirdo — you’re an Aspergian.” Anyone who’s watched The Ice Age knows what I’m talking about — that profound need (yes, even Aspergians have it) to belong, to be in a group of people who are like us, no matter how quirky.

It's been nice having a "herd."

Since 1994, people like me have had a “herd” — and now a group of medical professionals wants to dissolve it, meaning that I and people like me will simply go back to being “not quite autistic enough”, lurking uncertainly around the edges of a different, larger herd.

As things stand now, I can say to almost anyone that I have Asperger’s Syndrome, and they know instantly what that means. People — my friends, the staff at my health club whom I’ve chosen to “come out” to, medical professionals — know what I can do, what is likely to bug me, and what I simply can’t manage. It means I don’t get nagged to go to nightclubs, get a roommate, or join a book club; it means that when one of my friends is planning a nature trip or an expedition to a museum or zoo, I get an invite.

In other words, Asperger’s is a kind of card of introduction that leads to membership in my own new Asperger’s herd — and serves to introduce me to the wider non-Asperger’s herd.

Without that calling card, though, what will we Aspergians say by way of introduction? How will we describe ourselves? Will we say “I’m sort of autistic but not really,” or have to ramble off a smorgasbord of symptoms to our baffled listeners?

Or will we just give up trying and drift away, herdless, back to being “the weird guy who talks about bus schedules”, or “that girl who is so bright but can’t get along with her boss”?

Back to “oddball,” “bore,” “underachiever,” “loser”…

Back to “Bitch.”

Further reading:

New York Times article on DSM-V changes: here

John Elder Robison’s blog on DSM-V changes (Robison has Asperger’s, himself): here

Advertisements

12 thoughts on “Back to Bitch: what the new DSM-V un-diagnosis means to me

  1. Discovering my Aspergers identity in my 40s gave me the emotional relief that you refer to, The added benefit was finally belonging somewhere, with people like me, who understand me, accept me and even in some cases care about me! It is as you say a wonderful ‘herd’

    Ironically I have met none of these wonderful people in ‘real’ life and am unlikely to do so, but the friendship and community that I have experienced in the online Autism community is far more ‘real’, honest and enriching than I experience in my daily life in the ‘real’ world.

    I will continue to think of myself as an Aspie, as will many of my online friends, regardless of DSM V, but I can see how this might be unsettling, disturbing and traumatic to some.

    The concern for many will be the impact of the new Autism definitions and Diagnostics in relation to their vital support services and the eligibility to those services for those yet undiagnosed or even unborn!

    Thank you for inviting me to read this post. You story overlaps so much with my own, which I note from comments on other blogs is quite common.

    Glad to be connected on WP 🙂

    • Hi – so glad to be connected to you too via WP! In the last few months or so I’m finally discovering a really super “herd” of Aspergians, just like you said, via blogs & on Twitter. I’ve met few Aspergians in real life (I have a couple of AS friends, and have met some incidentally in interest groups I belong to) but these are the people I generally turn to — online or in person — when things feel awful in my head. (And they occasionally do…)

      I think you’re right that most of us will not give up our identification as Aspergians/Aspies/Asparagus 🙂 even if the DSM-V decides to throw us under the bus. The identity is simply too strong and the feeling of relief, of “herd”, too powerful to be demolished by lines in a book.

      But I do fear for the young ones and their parents who really, really need support services, and the older ones of us who have a lot of trouble getting along on this Strange Blue Planet — will they be left dangling, or worse? It makes me shudder….

      Thanks again for reading my stuff & the RTs on Twitter. Touching a fingertip to your now! (the E.T. “hello”!)

      A.G.

  2. This made me cry. I relate, too well, to everything you said; even the relationship disaster of 2008, but mine was 2007. I thought it was 2008 for a few years until I realized last year I had skipped a year of my life in memories.

  3. I hope you’ve found a bit of peace with the DSM-V classification since you wrote this. By the time I started my diagnosis track, two months ago, DSM-V was already a fact and it looks like everyone who was diagnosed as Asperger’s will still fit the criteria. This is why I change it up a lot, being autistic or aspie or on the spectrum all mean the same thing to me. (Maybe you can imagine my annoyance when it turned out my country won’t adopt DSM-V until 2014 and I’m not autistic or on the spectrum, only aspie! I hate operating under false assumptions.) Anyway, what I wanted to say was, remember when you were reading about the experiences of autistic people like Temple Grandin and felt that recognition… apart from being verbal at a young age? That’s all there is to it. With all those shared experiences, I’m not going to let verbalness (is that even a word?) stand in the way of finding my herd. The people who encounter the same difficulties as I do, the people who have the same marvellous quirky original way of processing information, regardless of whether they could speak at age 3 or not. I’m autistic.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s