Since I started this blog, many of you, and many of my “in real life” friends, have asked how I came to be diagnosed with Asperger Syndrome.
It was a long process, with many steps, and so, in the manner of my recent post in my other blog about my bomber-pilot Grampa, I will write about this one using bullet points as well. I find it easier to keep it short(ish) that way, and I know my Aspie friends often find bullets easier to follow.
Disclaimer: Let me say at the outset that I am a HUGE believer in getting things properly diagnosed by a professional. Self-diagnosis, or “self-DX” as these folks like to call it (whether the DX be Asperger’s, allergies, whatever), is dangerous on any number of levels: you can misdiagnose yourself with something that is actually masking something far more serious, and self-treatment can be a recipe for disaster (e.g., cutting out foods you decide you’re “allergic” to can lead to serious malnutrition). Don’t get me started. If you hate doctors, go to a wholistic practitioner. But don’t self-DX.
Buckle up — here we go.
So now that that’s out of the way, here you go. Buckle up. 🙂
1. When I was quite small my parents became increasingly concerned with my odd behaviour: toe-walking, hand-flapping, echolalia (repeating things from radio or TV, or what people said), terrible tantrums/meltdowns, hating to be touched or held, preferring to play alone. Off I went to the local children’s hospital for testing.
2. The diagnosis was “emotionally disturbed,” the same diagnosis Temple Grandin was given as a child. It was a bit of a catch-all for a lot of conditions, but top of the list was autism. I actually was totally unaware of any of this on any kind of meaningful level until I was about 14 or 15 — see Step 7.
3. Unlike Temple Grandin, however, I talked and had some friends. The ultimate decision was to leave it alone & see if time & social pressure faded out some of the weirder behaviours. In large part, yes. My mum tolerated some of my behaviours (she didn’t mind me lying on the floor listening to the fridge motor, for example) but forbade some of the others (like flapping). (This was in stark contrast to my dad, who enjoyed my intelligence — I was reading by 2 and a half — but hated the rest of it & used to beat the bejesus out of me.) At school, I used to jump up & down and squeak if I was excited; my schoolmates mocked that out of me pretty fast. Another friend taught me how to walk properly when I was about 12. She told me “you’re doing it wrong,” showed me how to land heel-first, and there we were.
Welcome to the Mother Ship.
4. When I was 8, I was streamed into the Gifted classes at my school — talk about Asperger Heaven. 🙂 We were all kind of weird. In many ways, I fit in like I’d been called home to the mother ship.
5. But I still knew I was pretty odd: my public behaviour was OK but it was a struggle. I was “eccentric,” you could say. As Asperger’s expert Tony Attwood says, the double-whammy of Asperger’s is that we’re weird — and we KNOW we’re weird.
6. While other kids were starting to notice the opposite sex, I was quietly reading medical textbooks and trying to figure out what the hell was wrong with me. And then when I was 12, Reader’s Digest published an excerpt from a book called “For the Love of Ann,” which was a father’s account of raising his autistic daughter. I read it and knew immediately what was wrong with me. But FFS, why had no one bothered to tell me?? I did not ask. I was increasingly scared of my parents, who (like John Elder Robison‘s parents, oddly enough) were travelling
No, you go ahead & swoon over boys. I have some research to do.
down their individual roads to hell: alcoholism (dad) and mental illness (mum). No point rocking that boat.
7. When I was 14 or 15, I overheard my mum talking to a friend on the phone about me: “Well, of course, she’s emotionally disturbed, you know.” My “inner DVD” blinks off again right after that, but (as the designated scapegoat of our family) I remember feeling intense shame and anger: sure, try to pin your adult problems on me.
8. I begin to read avidly, secretly, about autism — anything and everything I can lay my hands on. I am eventually placed in a group home (after my parents implode completely) but no one there picks up on my struggles either. I am doing fine in school, after all, and there are 10 other kids to keep an eye on. And “autism” doesn’t quite fit: the kids I read about mostly don’t talk, and are really, really disabled. Maybe I’m just making shit up. Ultimately, since I already know how to toe the line & do chores & keep my mouth shut, I simply do more of the same until my “release” to university.
9. Fast forward thru university, relationships, jobs. I am hitting all the “marks” in life, but just barely. I have a kickass academic record, a really good CV, and some relationships under my belt. I look great on paper….
10. … but my social skills and decision-making are appallingly immature and I am floundering as I try to figure out the increasingly complex world of adult life. I make increasingly stupid, disastrous decisions regarding work, relationships/dating, living arrangements, anything involving the “big picture.”
What Asperger’s feels like while you’re trying to look normal.
11. I try psychotherapy. Having had quite a bit of social work/therapy as a teenager (see “group home,” above) and going on my now habitual assumption that I’m broken, sick, “not trying hard enough to fit in with others,” I think therapy is What You Do If You’re Screwed Up. One therapist manages to get through to me that my childhood was actually pretty abusive on every level and I now focus on trying to “heal” from that. Hell, maybe that’s the root of all these wonky emotional problems after all. Yeah.
12. No. It’s not working. I change therapists and try Cognitive Behavioural Therapy, concerned that I’m becoming OCD and that my private temper tantrums and constant misanthropic irritability are becoming worse. Surprisingly, CBT is more helpful than I’d ever imagined. It is very intellectual in nature, focused on solving problems in the here-and-now. I get some much-needed relief.
13. But not enough. Fast forward again to October 2008. Yet another ill-starred relationship crashes and burns. I’m living in another apartment I hate, above another nutcase neighbour (pothead mother of two), and struggling along in another job I’m not suited for. The meltdowns (which I call “rage attacks”) are worsening, I hate everybody and everything, and most of all myself. I feel like a massive washout, a loser, a colossal fuckup.
There is no Ground Control…
14. I go back to therapy with my regular/familiar therapist. She’s some help but I seem to be entering “total systems failure.” I stop talking to people or looking at them. I go into work at nights so I won’t have to encounter humans.
15. I start thinking about suicide. I actually have a plan. It falls apart when I realize that I don’t know what to put in the note — how can someone so “successful” and “smart” and “talented” and all that crapola be such a lost puppy, such an underachiever, such a bloody failure? Did I just not try hard enough? Do I just need more/better/different therapy? Am I copping out?
16. Something, somewhere deep in the recesses of my brain, whispers “Asperger Syndrome,” and for whatever reason, I listen. As I did when I was a teenager, I start reading obsessively about autism again. Asperger’s, which entered the public/therapeutic lexicon circa 1992, is now on my menu as well, although mostly I’m still thinking, “Nah, not me. Stop being such a drama queen and just learn to fit in, fergodssakes.”
17. Monday March 9, 2009. I watch a film called “Autism: The Musical.” One of the scenes shows Steven Stills’ little son Henry, who has Asperger’s. I sit up sharply: there, on the screen, is me as a child. The exact, eccentric — and surprisingly charming — way of talking, moving, laughing. I sit there completely stunned — and oddly filled with compassion and understanding. Fuck me. Maybe I’ve got Asperger’s after all.
The little guy who made my “Aha!” moment.
18. I take a couple of online Asperger’s tests over the next few days. This is the Internet age, after all. I score surprisingly high, no matter how many times I try to skew the tests to what I think of as “normal.”
19. March 20, 2009. I gather up my courage and call the Asperger’s Society of Ontario, which refers me to the Redpath Centre. I leave a message. One of their counsellors calls me back at work. I take my cellphone out to the parking lot and stand in the snow talking to a gentle, soft-spoken man about what I think, maybe, might be my problem. And for the first time in my life, someone else is speaking my language: I don’t have to struggle to make myself understood. Everything goes very calm and quiet in my head.
20. March 30, 2009. I go in to the Redpath Centre for my “assessment” with the Nice, Gentle Man. It is the most gruelling afternoon I can remember in a long time: this guy asks questions about parts of me, my behaviour, that I thought were only mine to know. At the end, heart in my mouth, I ask, “What do you think?” And he says, “I think it is very probable that you do have Asperger Syndrome.”
I phoned home, apparently.
21. The next few days pass in a sort of stunned haze. My diaries from that time are sparse. “I have no idea what I’m feeling,” crops up several times.
22. April 2, 2009. I return to the Redpath Centre and meet with the Nice, Gentle Man to hear about my results. I’m afraid of both Yes and No. If “No,” it means I really am just weird and broken and “Not Trying Hard Enough,” and will probably be spending the rest of my life in therapy trying to figure out why I refuse to get with the program — or just killing myself. If “Yes,” then… well, I actually have no idea.
23. It’s Yes. I take notes as the Nice, Gentle Man talks about his findings (i.e., me) and we talk for a couple of hours. To my horror, I begin crying uncontrollably. I am not a crier. The nearest I can come when Nice, Gentle Man asks what’s happening is “Oh my god, how is it that NO ONE EVER KNEW AND HELPED ME WITH THIS???”
Life with undiagnosed Asperger’s.
24. I spend the next few months talking about this, and other bits of fallout, with the Nice, Gentle Man. His approach is that Asperger’s has definitely left a trail of destruction in many areas of my life, but that it has also given me many gifts. My job, he tells me, is “to change what you want to change, and keep what you want to keep.” My reading of Temple Grandin and John Elder Robison, in particular, confirms that this is a good solid approach that is, oddly, do-able.
* * * * *
And so ends my Diagnosis Story. At time of writing, it’s been nearly four years now since the last bits of it — the ultimate diagnosis — took place, and I have to say it’s been quite a ride. For the first time in my life I’m OK-ish in my own skin. I know what the “monster in the closet” is, finally, and have thrown some light on it, looked it right in the eyeballs, and learned to more or less work with it.
Not to say it’s easy, obviously (the other entries on this blog would be testament to that), but there is something to be said for living authentically. It’s like having the correct eyeglass prescription for the first time in my life. It has taught me to look fearlessly — and with surprising compassion — at myself and my life. I have made apologies to people where that’s been warranted (one treasured boss, for example, who experienced some of my “backsplash”), and I have slowly but surely been putting safeguards in place to avoid making Asperger-related “operator errors” in future, if at all possible. Knowledge is, indeed, power.
I will end this here, because this is getting horrifically long. If you’ve stuck with me for the whole thing, I thank you for reading and for your interest.
And one last time — if you think you or someone you know has Asperger’s Syndrome, go for an assessment. No matter what, the Monster in the Closet is not nearly so scary when you switch the light on.
Any questions, just ask.
PS. There was no good place to put this, but after I got home from Diagnosis Day, I fell into a dead sleep for two hours. When I woke up, CBC Radio was playing this song, “Everything is Moving So Fast“, by the Great Lake Swimmers. I went straight out and bought the CD, and every time I hear that song I think of Diagnosis Day.
It’s often not as bad as you think.