Tag Archive | autism

Cipralex: Calming the “wild horse” of Asperger meltdowns

The Aspie nervous system.

The Aspie nervous system.

One of the biggest drawbacks of having Asperger Syndrome is the temper meltdowns that come with it. Life on the autism spectrum means, for all of us, a nervous system that is set on “red alert” 100% of the time: you know that smoke alarm you have outside your kitchen door that goes off every time you make toast? Yeah, that’s us.

Little things that other NT/not-on-the-spectrum people don’t even notice make me crazier than a cat in a bag: the sound of the fan on my computer when a program is installing; sudden noises; someone touching me unexpectedly; the sound of someone whistling, snapping their fingers, or jingling their keys; the sounds of people chewing loudly or licking their fingers or clicking gum; the feel of a label or a seam in my clothing….

DIe, pants, die!

DIe, pants, die!

When I was about 7 I had a massive morning-long screaming battle with my father, who was trying to stuff me into a pair of new denim jeans. Even now, tight clothing, or anything that flutters or dangles or clings at my neck, will make me break out in a cold sweat.

Hell no.

Hell no.

Many of us, myself included, learn to manage this hyper-reactivity simply as a matter of survival in the adult world. My nervous system calmed down somewhat as I grew older, and as I matured and entered university and the working world, I was very motivated to blend in and act more like my colleagues: ripping my shirt off in the newsroom because a label was itching my neck was pretty much out of the question.

In the last year and a half, however, I’ve noticed some alarming “symptom creep”, probably due to hormonal fluctuations related to the fun, fun phase of life called perimenopause. It started with increasing moodiness and irritability, and initially I was able to dial that back with a couple of herbal supplements, Vitex among them.

I worked harder at modulating my (increasingly awful) moods: I got out my old Cognitive Therapy workbooks and looked at those; I made sure to get exercise and sun and fresh air every day; I did yoga; I avoided annoying people and situations as much as I could. I even got to leaving inspirational notes to myself on mirrors, cupboard doors and so forth.

Everything's great. Thanks for asking.

Everything’s great. Thanks for asking.

But a few weeks ago I realized I was basically living in “crisis management mode”, more or less existing from one meltdown to the next. If I wasn’t having a meltdown, I was either uneasily anticipating the next one or just recovering from one.

So with a heavy heart, I made an appointment to see my family doctor. She prescribed blood tests to make sure my thyroid, B12 and iron levels were all right. She recommended some mindfulness and meditation exercises to calm my nervous system down, and then, since she knows very little about Asperger’s, suggested I go see M., my Asperger specialist, and bring her his recommendations.

Long story short, M. was as alarmed as I was. “The joy seems to have gone out of you,” he said, which made me sad. He, too, recommended mindfulness and meditation exercises, and then to my surprise (and horror…) told me that many people on the autism spectrum are helped by subclinical doses (i.e., much less than normal) of a drug called Cipralex (it’s called Lexapro in the United States). There is ample research, he said, that it helps dial back some of the irritability that is the hallmark of Asperger’s.

I took this recommendation, and his other remarks, back to my family doctor and took my first dose of Cipralex at lunch that day.

Typically, these sorts of drugs (selective serotonin uptake inhibitors, or SSRIs) take several weeks to get fully into your system and do their magic, but I began to feel calmer after just a couple of days. Partly this could be the “placebo effect” (you think it’s helping, so it does); partly it could be the mindfulness reading and practice I’ve been doing; partly it could be just the fact of finally getting help with all of this.

Whoa, Meltdown. Whoa, boy!

Whoa, Meltdown. Whoa, boy!

Whatever the reason, though, it’s like the “mad wild horse” I’ve been living with for months now has finally been quieted. Instead of it plunging around and my trying vainly to grab the reins and calm it down, it’s just… standing there. Quietly. Blowing steam gently out of its nose and munching grass.

It’s the strangest feeling, like something has been almost physically cut out of me. I drop a fork on the floor, say, and there is no urge to scream and swear and rampage around the apartment. The computer gets noisy and I simply shut it off and go do something else. It is the strangest thing ever, like a fever breaking.

The downside, though (and there always is one, when you put chemicals in your body) is a bit of a sedated feeling: today, Day Six, I feel like I have a mild case of the flu. I’m very, very tired and dragging myself around the house a little bit. However, I’m confident that this, too, will pass as my system adjusts to the new regime.

And frankly, this is a really small price to pay for longed-for peace and quiet.

I must add a few caveats here: I am not a big advocate of simply medicating undesirable behaviours out, for any reason. I think of drugs as an absolute last resort, to be used only after lifestyle changes and therapeutic interventions have failed. Also, what works for one person will not necessarily work for another — for whatever reason, Cipralex seems to work for me right now, for my specific symptoms and chemical makeup and body type.

As with all medical decisions, talk to your doctor and/or a specialist first and rule out any other conditions that may be causing a sudden onset or return of symptoms.

I will keep you posted as this experiment goes on.

Yours calmly,

A.G.

 

Advertisements

“This is Autism” Flash Blog: Autism in my life

** This is my contribution to the “This is Autism” Flash Blog series of posts.  The Flash Blog is a response to a call for submissions from people with autism to write about what autism means to them.

The call is, in turn, a response to an op-ed piece that was published last week by Suzanne Wright, founder of the controversial organization Autism Speaks, about what she called the “problem” of autism.

*************

It is always a bit of a jolt to my system to think of myself as having “autism.” This is probably because, like Temple Grandin, I grew up with a diagnosis (albeit, not discussed…) of “emotionally disturbed” (which, in my case, meant “fits most of the criteria for autism but boy, does she ever talk”) and was finally diagnosed, in 2009, with Asperger’s Syndrome rather than autism.

The publication of the new DSM-V, which “decommissioned” Asperger’s Syndrome, if you will, and lumped it into the more general “autism” category, is a loaded and complicated topic on any number of levels, and I am not going to even attempt to touch that here. I’m aiming to start writing a book in early 2014 (during the usual lull in my work) and I will likely address it there.

Aaaaaaaaaaaaaaanyway.

So, for the sake of the Flash Blog, let’s take it as read that I have autism, the Autism Spectrum Disorder (ASD) Formerly Known as Asperger’s Syndrome. There we go. 🙂

Like many other contributors to today’s event, I’ve written about some of the down-sides of having Asperger’s. And they can be legion, trust  me. (Seriously. As I write this I’ve been jumping up and down from my chair, gnashing my teeth about a piece of cat hair tickling my eye and stomping over to angrily turn off CBC Radio, which seems to be broadcasting not classical music but the sound of a herd of wildebeests on crystal meth rampaging through a high-school music room. Seriously.)

But today is not the day for that. Asperger’s and autism confer both disabilities and gifts on the people they touch, as John Elder Robison has said, and today I’ll tell you about the gifts that having autism has given me.

1. Autism has given me a high IQ and good language skills. I was the archetypical “little professor” as a child. My astonished mother recorded in my baby book that I sang “Happy Birthday to Me!” on my first birthday. When I was two-and-a-half and getting used to having a new baby brother, I asked her where to find “penis” in the dictionary (I had been thinking it was spelled “peanus,” like “peanut”), at which point she realized I could read.

For me as an adult, having a facility with language and a sharp intellect means I am really good at my job as a book editor and writer, and have excelled at past jobs that have included news researcher, sports writer (really…) and web writer. It also means I have a lot of fun at Pub Trivia Quiz nights, and that I love trivia/knowledge-based games and puns and anything involving an intellectual learning curve. I love documentaries, I read like a fiend, and I basically drive my “big brain” like a Porsche on the Autobahn.

1. a) Big brain = big brain plasticity. Having smarts means that I can also learn to do things that don’t come easily to me. In other words, some of the deficits of Asperger’s/autism can, paradoxically, be overcome by the smarts conferred by having Asperger’s/autism. People who meet me now are often astonished to know that I was a very shy, awkward, socially inept young person with no real sense of humour. But I began to learn how to do things differently to make myself a better employee and more socially adept in general, mostly by watching and imitating people who did these things well, and sometimes by reading or consulting a therapist or specialist. I am on-side with Temple Grandin, John Elder Robison, Tony Attwood and legions of other autistic and austistic-friendly people in my unequivocal belief in brain plasticity and the power of human brains (and their owners) to reshape themselves to requirements.

2. Autism has given me a 3D appreciation of music. I am not a musical prodigy (I don’t think my poor mum could have handled that!) but I was able to play the piano pretty well from an early age. I not only hear the music, I “see” and feel it really intensely. I have a condition called synesthesia, which many people with autism have, and it basically means that the input systems for hearing and sight are cross-wired (just as researchers have theorized that the entire autistic brain, in and of itself, is cross wired). Sounds can irritate the living bejeebers out of me (see introduction re. wildebeests) but they can also send me almost into orbit with pleasure at times. I would not give this up for the world.

3. Autism might be why I get along so well with children and animals. For me, having Asperger’s is like being 11. Forever. I can and do moderate my behaviour in public and in the workplace, of course, but outside office hours, I am a kid and animal magnet. I’m the one at any house party or social gathering with all the available rug-rats stuck to me like lint. I like their natural curiosity and enthusiasm, and have lost none of my own, so it’s a good match. I babysat a lot as a teenager, and had to negotiate homework time over the cries of clusters of small ones on the back porch pleading “Can you pleeeeeeeease come out to play??”

Temple Grandin postulates that people with autism often get along well with animals because animals don’t lie or use words to obscure their meanings. Animals are unequivocal in their like or dislike of a given life form or situation, and they like us on our own terms. I find the presence of animals very calming, which in turn makes most animals calm around me. On my visits to Reptilia, a reptile zoo/centre north of Toronto, I’m often buttonholed by the staff to help hold a critter or two while its cage is cleaned. I once taught a skittish horse to calmly nibble the end of a carrot I held between my lips.

4. Autism has given me good organizational skills. Adherence to routine is one of the hallmarks of Asperger’s and autism, for sure, but I’ve learned to use this to my benefit. When I was a kid, it meant my study skills were good. As an adult, it means that I run my business as a pretty tight ship. I don’t miss deadlines, and my files are in order. My house is clean (but not OCD clean) and so is my car. I am rarely late for appointments and my shots are up to date. 😀

Well, speaking of deadlines, it’s time for me to wrap this up and get back to work. I hope this has answered some questions, and maybe raised some other important ones. As always, feel free to contact me if you have more.

As I’ve said before in other posts, autism/Asperger’s can be a very hard slog and some days it does feel more like a disability or a curse than a gift — to us, and to those around us. But it is both. To characterize it as a “problem,” as Suzanne Wright has done, does a huge disservice to the dignity and the humanity of those of us, and our friends and our families, who are touched in so many respects by this different way of being on this Earth.

Thank you for reading.

J. Mc. (aka. Asparagus Girl)

Diagnosis and Beyond: My Story (because you asked)

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.

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.

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.

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.

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...

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.

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.

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.

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.

Cheers,

Asparagus Girl

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.

It’s often not as bad as you think.

The Pittsburgh “Lab Rat” Report

As many of my blog & Twitter followers know, I spent several days last week as the guest/lab rat of the Center for Excellence in Autism Research at the University of Pittsburgh (CEFAR).  (Read my previous entry for the details of what they are doing.)

Armed and ready for my trip!

Because I didn’t take my laptop with me (I didn’t want to tote it thru airports, or spend my evenings typing in my hotel room), and because of the limited capacity for detail on Twitter (that 140-character thing!), my reports were pretty limited.

But many of you (bless your ears) have asked for a full report of the experience — both the testing I underwent at CEFAR and my travels around Pittsburgh in my free time — so, without further ado, here it is!

Day One (travellin’, travellin’):

My flight out of Toronto was in the early morning, so I was up at the crack of 3:30 a.m. to finish getting ready & drive up to my dear friend Ann’s. I left my car at her place while I was away, and she drove me to the airport and picked me up at the end — I always feel more settled on trips when she does this for me. 🙂

My little old driver, so lively and quick….

Arrived in Pittsburgh shortly after lunch and was picked up by a limo service hired by CEFAR — the airport is way outside the city, so the lab makes sure their volunteers get safely to the hotel. My driver, a lovely gentleman named Kim, chatted with me about his city and as we were entering the Fort Pitt Tunnel he alerted me to keep looking, as “the city just POPS into view!” And indeed it does — gorgeous skyline, beautiful view of the rivers and bridges! (I have inserted a slideshow of photos below, if you’d like a look)

After checking into my hotel room at the Hampton Inn (where all the CEFAR lab rats stay) I dumped my stuff, a la Bill Bryson, and headed out to see what I could see. I was bug-eyed tired but determined not to waste a precious minute of my time away. Pittsburgh is known for rolling up its sidewalks very early, so I didn’t want to dally in my hotel room.

Thanks to John Elder Robison‘s Facebook and Twitter postings about his trip to CEFAR a few weeks ago, I knew to head up Forbes Avenue to the museums and student eatery district, so I did just that.

My ticket to paradise, for about 36 minutes.

I arrived at the Carnegie Museum of Natural History just before 4 and since it closes at 5, the nice lady at the desk gave me a “comp” to get in! With a HUGE smile on my face, I checked my knapsack in a locker and scurried off to the art galleries upstairs. I stopped briefly in the dinosaur area but found it too overstimulating and thought an art exhibit might be just the thing.

Which it was… until, at 4:36, the fire alarm sounded. Just what an overtired Aspergian needs… NOT. So I clamped my hands over my ears and followed the rest of the crowd out the rear doors to the parking lot.

I was about to call it a day and go get some chow when I realized my knapsack was still in the locker — with my CEFAR itinerary, my glasses, my journal, and various other crucial items in it! There followed an anxious half hour of negotiating with security before I was allowed back in, escorted by a guard, to retrieve my belongings. (There was, of course, no fire. Pittsburgh is having a heat wave and it had activated the alarms. Sigh.)

I was completely fried by this time and having a struggle to keep my temper, but resolved not to let this spoil my first day. I trooped back out to Forbes Ave. and trundled back toward the hotel. I stopped en route at a sushi place and picked up a nice Green Dragon Roll to take back to the room for my supper.

Showered, unpacked, ate sushi in front of the telly and was asleep by 9 p.m.

Day Two: first day of testing at CEFAR

I was due at the Webster Hall labs on the University of Pittsburgh campus at 9:30 a.m., so after a complimentary breakfast in the hotel lounge (where I caught several of the front desk staff discreetly watching me — they keep an eye on all the lab rats, which I love), I went out front to await the hotel shuttle. It travels, free to guests, anywhere within a 3-mile radius of the hotel, which includes the CEFAR labs at U of Pitt and Carnegie Mellon University.

Made my way up to the labs, buzzed to get in, and after a short wait was taken off to an interview room by a nice lady called Rachelle to sign some legal forms. This is where I agreed to all the procedures I was there to do, and also agreed to have my data shared by other labs on request. This latter part is not mandatory but because I’m a female (rare bird in the Asperger’s world) I thought it would be helpful. My take on it is I was there to help so I wanted to do everything I could to be of use.

After that, Rachelle did a more in-depth Autism Spectrum Diagnostic Questionnaire thing with me, where she asked loads of questions designed to see where my strengths and deficits are. I was asked to define things like “friend” (surprisingly hard!), to tell a story using a handful of random objects from a toy box, to tell a story from a picture book (flying frogs!) (really!), and to pretend Rachelle was an alien and I had to instruct her on how to brush her teeth.

In other words, a lot of verbal testing and question-and-answer. It was videotaped because Dr Nancy Minshew, who runs this project, likes to show videos and demos of Aspergians when she does speaking engagements. Thank God I’d just had my hair done! 😉

The Highmark Building near Webster Hall, appearing as the Gotham City Courthouse in the new Batman movie!

After that, I was handed over to a woman named Maureen, who did some IQ testing: word comprehension, block puzzles (recreating shapes in a book with a handful of red and white blocks), handedness/dominance (I write with my left but do everything else with my right), grip strength, pronunciation of increasingly difficult words (I nailed the last one, “Terpsichorean,” and then rambled on about its roots and definition, causing Maureen to write furiously in her notebook!).

Then off to be weighed (argh) and have my cranium measured (a very average 57 cm, not like “Head” in “So I Married an Axe Murderer“!).

Finally, a quick pre-interview with someone named Holly in preparation for the afternoon’s activities.

LuLu’s, a venerable student eatery. Mmmm… noodles.

On the way out to Craig Street for lunch (noodles at LuLu’s), I walked by St James Cathedral and stopped to get a few shots — amusingly, in doing so I inadvertently wandered into the driveway to the church and was nearly run over by a nice little nun in a Mazda, who honked politely and giggled at me as I leapt out of her path!

Then it was back to Webster Hall for more testing. This time I was asked to look at photographs of faces and indicate which ones matched. Having sailed through most of the morning’s tests, I was horrified to bomb completely at this one. I’ve known for a few years that I’m awful at recognizing faces (movies are a trial for me because everyone looks the same, and I have inadvertently insulted countless acquaintances and friends by not recognizing them when they pass me in the street) but this was proof positive that it really is an issue. Wow.

St James Cathedral. Driveway photographers will be run over!

Still pondering, I was then led downstairs by two young researchers to a mockup of an MRI machine, made entirely of wood and plastic by some theatre students on campus! Apparently these things are a dime a dozen in the TV industry (think ER, Grey’s Anatomy etc.) but boy, was it cool! I had already been pre-screened, months previously, during my phone interviews with the CEFAR researchers, as to whether or not I was OK being in an MRI machine, but they really want to make sure, so into the simulator I went.

Looks just like the real thing, no?

There’s a plastic mask that fits over your face to hold your head in place, and you have to hold a computer mouse on your belly, watch a screen, and click the mouse to answer questions — this is in preparation for the real thing the next day, in the real MRI, where they will be measuring your blood flow and brain function as you do the questions in real time.

Passed with flying colours and was released once more into the wilds of Pittsburgh, this time with a complimentary pass to the amazing Cathedral of Learning and its national-themed classrooms. I texted a friend of mine as I headed off and she laughed that I was truly in “Asperger Heaven”! Yup. 🙂

Spent a happy couple of hours in there, then cooled my heels in a nearby Starbucks, trooped home to the hotel for a quick shower and then caught the hotel shuttle back out to see the Duquesne Incline. My stars, I could have stayed there all evening — best $5.00 I ever spent! And for 50 cents extra, you can go into the “Gear Room” underneath it, which of course I did. Absolutely mesmerizing — and I’m amazed at how many Pittsburgh natives didn’t know about that room. If I lived there I’d be a regular for sure!

Had myself a nice burger at Five Guys Burger & Fries afterwards and then headed back to the hotel again.

Day Three: second day of testing at Carnegie Mellon and CEFAR

What an incredible day. I rode the shuttle again, this time to Carnegie Mellon University, and had a lovely chat with Tracy the shuttle driver as we went. She is familiar with all us lab rats (as are the hotel staff, as I mentioned) and was curious about the things I was doing. She has a 29-year-old nephew who likely has Asperger’s so I recommended a few books she might like to read.

At CMU’s fMRI lab I met a researcher named Kara, who spent about an hour prepping me for the actual MRI. We sat at a computer and ran through the tests I’d be doing in the machine: more face recognition — groan — and shape recognition, then watching a movie for half an hour while they did a structural scan of my coconut, then a few minutes of watching a stationary dot on the screen while they watched my brain resting.

Again, I was put into a simulator (seriously, these things are everywhere! I should order one for my home!) for a final run-through, this time with the added test of making sure I stayed absolutely still, and then it was off to the real thing. The technician, Steve, had me fill out a questionnaire about any possible metal bits in my body that I forgot to mention during my phone screening in May (I have a titanium screw in my knee from an ACL replacement, and an implant in one of my teeth), and various other health issues that might cause problems (in my case, nothing).

I’m Batman.

Then off with the bra (metal underwiring, don’t ye know) and the belt, earrings, glasses, necklace, rings…. My jeans were fine, oddly enough, even though they have metal buttons & zips. Don’t ask me why.

I was fitted with a pair of plastic glasses so I could see the screen for the tests (dead sexy), had earplugs shoved in my ears (the machine is VERY loud), and led into the machine room. It makes a rhythmic “thump-chirp” sound that makes it sound very much alive; it’s cooled by a series of pumps that shove liquid helium through it, and that’s the source of that sound.

I sat on the bed part of the machine while Steve strapped a band of electrodes around my head and a hair-net on top of that. With the Buddy Holly plastic specs, I was quite an object of beauty!

I was then told to lie back with my head in a little tray. The plastic “Batman” mask was clamped down over my face and foam padding was tucked in to immobilize my head. You’re told about 4000 times beforehand to go to the bathroom and make sure you have all your itches and twitches taken care of before this. Check, check, and check.

One lab rat, ready for processing.

The computer mouse was put in my right hand, and the “OUT!” emergency button into my left — you’re told that if you push the OUT! button, you’re taken out immediately, but the test ends. (Frankly, if you’re tempted to push the OUT! button at this point, you’re an awfully good faker!) A blanket was put over me (it is VERY cold in that room) and with a quick “zoop!” I was raised and inserted into the MRI like a Pizza Pocket into a microwave.

A few moments later I heard Kara’s voice through the little intercom asking if I was OK and comfy and ready to begin. Ten-four, good buddy, let’s get ‘er done!

The first bit was the face recognition, which I bombed again, unsurprisingly. Every so often I was startled by the machine making a new sound (it was probably laughing at me). It has several modes: the “thump-chirp” I mentioned before, a sort of “thump-swish” that’s dangerously sedating (like a heartbeat), and a loud buzz and grind. After a while I stopped being startled — and frankly, I was really focused on NOT moving my amazing 57-cm cranium, ever.

They ran the face test 3 times, then the shape recognition (I’m better at that), and then I spent a strange half hour watching Spiderman (you pick your DVD before you go in, from their little library in the control room) with the subtitles on.

By the time I was about 20 minutes into the movie, however, I became aware of the fact that… oh no.. I needed to PEE. (Note to self: two coffees before an MRI are probably not the best idea.) However, having sat thru 5 hours of Schindler’s List with a full bladder, I simply gritted my teeth and soldiered through. Made it through the 5-minute “stare at the dot” activity, lay quietly while Steve released me from my various restraints, and then headed with purpose to the washroom.

I am master of my own bladder… I am master of my own bladder….

I was given a nice computer printout of my brain from several angles (all the lab rats get this, as it’s so fascinating!) (and yes, they found an actual brain! ;-)). You’re also told at the start that if they find anything structurally awry, such as a tumour or aneurysm, you’re given a print of that to take home to your own physician. Thankfully, no such thing was found in my coconut.

Amanda, from CEFAR, came to fetch me in the U of Pitt van, and dropped me on Craig Street once more for lunch. I was surprisingly exhausted and after a quick sandwich, bailed into Starbucks for some badly needed caffeine and down-time.

Then it was back again to CEFAR for a family medical history (brief and spotty because I’m adopted), a blood draw (I hope they will send me at least one of any clones they make!) and the finishing-up with Amanda. I was surprised to learn that lab rats are paid a small stipend, which pretty much covered all my meals out and a few T-shirts for souvenirs — it’s awfully nice of them, given that they also paid my plane fare and my hotel and limo bill!

Then handshakes and thank-yous all round and I stepped, blinking a bit, out into the bright sun of a Pittsburgh afternoon.

The Schenley Park Bridge over Panther Hollow.

I was still utterly exhausted and it was tempting to go back to the hotel for a nap. But I knew that once I was in I’d likely stay in, and I did NOT want to miss a thing. (My dad used to travel for business and never explore; infamously, he went to Athens and stayed in his hotel room. What a dork — I have sworn ever since that I will never, ever do that!)

So I headed off to Schenley Park (Pittsburgh’s answer to New York’s Central Park) and the Phipps Conservatory. Got loads of pictures of the Schenley Park/Panther Hollow Bridge (I like bridges as well as machines), and of flowers in the Conservatory. It was beastly bloody hot, but again, I was utterly determined not to waste a moment!

Afterwards, I cooled off in the Carnegie Library (“Free for All!”) where a nice librarian gave me a complimentary pass allowing me to use their Wi-Fi and update my breathlessly awaiting audience (cough) via Facebook and Twitter. Again, if I lived in Pittsburgh, I’d be here most of the time — they have an enormous collection not only of books but also of sheet music, DVDs, and CDs. And I swear I’ve seen their reading room in more than one movie….

The Phipps Conservatory.

Back out to Forbes Avenue one last time, where I stopped by a noodle place for supper, and then headed back to the hotel to pack up, feeling strangely at loose ends after all the excitement and attention.

My flight home was another early one, so I was in bed early with lights out.

And that, my dear friends, concludes my story of “A Lab Rat in Pittsburgh.” As I write this, a team of researchers are going over my data and sorting it into useful bits that may help to provide more clues into what’s going on in the autistic/Asperger brain.

I am touched and honoured that CEFAR chose to invite me to take part in their study, and blessed to have had an opportunity to help with this research and maybe help decode some of the mysteries of this strange and sometimes wonderful condition.

I’m very grateful to the CEFAR staff, the staff and researchers at Carnegie Mellon’s MRI lab, and the staff at the Hampton Inn (Pittsburgh University Center) for their incredible kindness and generosity to me. I was looked after like royalty from the time my plane landed in Pittsburgh until “wheels up” on Wednesday morning, and never once felt lost or at loose ends or like I was having anything other than the time of my life.

I am also very touched by all my loyal friends and readers who expressed an interest in my trip, followed me on Twitter and Facebook, and encouraged me to step out of my comfort zone a little bit and go travelling during my busy work season.

Thanks for reading.

–Asparagus Girl. 🙂

Pictures from My Trip

This slideshow requires JavaScript.

It’s a girl…it’s an Aspergian… it’s a lab rat!

Just a quick one: tomorrow morning I’m off to The Center for Autism Research (CEFAR), at the University of Pittsburgh, where I’ve been invited to be a “lab rat” for a study by Dr Nancy Minshew and her colleagues on the workings of the autistic/Aspergian brain.

Autism study, you say? Certainly! Let me get my things…

I’ve done a lot of online research for CEFAR, and for other research institutes around the world, because I enjoy it and because I think it’s important for us Aspergians to take part where we can and help build a better picture of what exactly is going on, mechanically speaking, in autism. So because my name and data were already in CEFAR’s files, I got a phone call a couple of months ago asking if I’d come down in person and lend my cranium for some more in-depth research.

Although I was a bit hesitant at first (it’s a hectic time of year for me, work-wise) I was persuaded partly by a couple of good friends who bolstered my courage and reminded me that I’d feel like a knob if I passed up this opportunity — not just an all-expenses-paid trip to Pittsburgh, but the chance to be of help to others like myself who live with autism and Asperger’s.

And partly it was because I saw the Facebook postings of one of my heroes, John Elder Robison, who has Asperger’s himself. He was there just a couple of weeks ago, and once I saw actual pictures of the procedures, and of Pittsburgh itself, I was hooked. Hell, if he (and Temple Grandin — another of my heroes!) can do it, then so can I.

It’s two full days of being poked and prodded and examined: pencil-and-paper tests, an IQ test, verbal testing, a blood draw (to lend some DNA to try and determine whether something is going awry at a chromosomal level with us Aspergians), and the Piece de Resistance (for me, anyway): an fMRI, where they stuff you in one of those big noisy machines, ask you all sorts of questions, and watch the blood flow in your brain.

Why the hell do they want ME, specifically? you ask? Well, aside from my irresistible wit and charm <cough>, it’s partly because women are terribly under-represented in these studies: only 1 in 10 Aspergians are female. Also (like Mr Robison and Ms Grandin), I’m articulate about my experiences (or so they tell me), and I’m also very blessed in terms of being able to function more or less OK (unlike a lot of my peers — did you know only 12% of people with Asperger’s are employed at all???). This is in no small part due to my having been blessed with a lot of good, accepting friends and teachers over the course of my life, especially in the last 3 or 4 years: you know who you are. It would seem (without sounding too pukey about that) that this is my perfect chance to “pay it forward”.

Preheat to 375F and insert lab rat. No… wait…

Anyway, before I sign off here (I’m up at 4:45 tomorrow to catch my flight… good times…) I’ll leave the last bit to John Elder Robison, who describes exactly what the studies are about:

I’ve come back from a fascinating visit with Drs Nancy Minshew, Marcel Just, and Diane Williams. They are using enhanced MRI, FMRI, and Diffusion Tensor Imaging (DTI) to see inside the brain. They are actually beginning to decode thoughts and feelings, rendering words like house or apple recognizable in images on the scanner, based on how our brains respond to the feelings the words evoke.

They are using DTI to generate maps of the connection pathways in the brain, making maps that look like incredibly complex wire frame sculptures. Those maps are showing some key differences in how autistic people pass information from one part of the brain to another and they may shed light on why some of us experience a midlife flowering of some reasoning powers.

Some of what they are doing is straight from science fiction but it’s real and holds tremendous promise for the future.

Are you interested in joining their study group? They are seeking people with an autism diagnosis, 45-70 years of age, and willing to travel to Pittsburgh. Write me and I’ll connect you, and read more about their lab here:

http://www.wpic.pitt.edu/research/cefar/research/default.htm

Anyway, I must get to bed, so that’s all for now. Follow me on Twitter if you like (@AsparagusGirl), and I’ll be posting updates as I go, as time (and Wi-Fi availability) permit!

–Asparagus Girl

I shall be handsomely paid in grain and carrot slices. 🙂

Everyone needs a Seeing-Eye Person

I’m a pretty independent person, as people who know me will attest.

Stubborn as an Aspergian.

I think it comes of having a Scottish heritage, being Aspergian, and of having been more or less abandoned by my parents, who simply weren’t interested in children. (This of course begs the question of why they adopted at all, but that’s a subject for another day.)

In other words, I am not only biologically inclined towards independence, but was driven to it by circumstance. I am not alone in this: one of my heroes, John Elder Robison, is another excellent example of a self-raised Aspergian.

Anyway, sometimes this is a really good thing: it means I’m organized (and how), and that when there’s a job to be done, whether it’s cleaning house or getting a book edited on deadline, I do it. It’s enabled me to complete a postsecondary education, be employed, and have a roof over my head, a car in the driveway, money in the bank, and food in the fridge. Nothing fancy, mind you, but I do manage to keep the wolf from the door.

However, there are also some serious down-sides to being so independent, and those usually occur where my need to get ‘er done, now, on my terms, meets the crushing naïveté of Asperger Syndrome.

I’m the one that should be on the leash sometimes. 😉

As I’ve explained before, Asperger’s has made me fact-smart and people-stupid, meaning I’m great with setting up a study schedule or invoicing system for myself, but really bad with decisions involving social interactions. If life came with report cards, I’d be acing out in all the geek subjects, but flunking dismally in office life, friendships, and romance.

And this is where the folks I like to call my Seeing-Eye People come in. Just as people who are blind often have guide dogs that keep them from crashing into trees and falling down flights of stairs, I have acquired, in the last few years, a small, trustworthy group of people who help to keep me from stepping on too many land-mines in my dealings with other Humanoid Life Forms.

My decision to acquire Seeing-Eye People was motivated by some of the looking-back I did, with an Asperger’s specialist, after I was diagnosed in April 2009. He praised my accomplishments, but also gently pointed out the gaping craters of destruction where Asperger’s (and my unwillingness to ever ask for help or advice) had made its mark on my life — failed romances, poor choices of friends and partners, money lost to unscrupulous people, unhealthy career decisions….

Eventually, slowly, I began to understand not only that maybe some of these craters could have been avoided if I’d been able/willing to ask for advice, but also that asking for help is something we all — NT and Aspergian alike — need to do from time to time.

In fact, one of my Seeing-Eye People, my friend K., said to me recently that over the course of our friendship she has often worried terribly about me, as I’m so easily taken advantage of.  However, since I wasn’t the ask-for-help type, she had to be content with watching uneasily as I slipped on banana peel after banana peel, socially speaking.

Getting rid of sharky “friends” is a must.

K., of course, was and is a keeper. But step one in the process of selecting the rest of my Seeing-Eye People was jettisoning some bad apples — drama queens, for example, or people who were only hanging around me for money or sex (or both), or sponges who were only nice to me when they needed a favour.

This left me with fewer friends, but better-quality ones. It’s a hard thing to do, and makes for a bit of loneliness, but it’s worth it in the long run.

Step two was recognizing when I was in a bind, or didn’t know what “social protocols” were expected. For most of my life I’ve just bashed my way through whatever decision needed to be made, and damn the torpedoes. Now I have to do a bit of sorting: “Is this something I normally do successfully on my own, or does this require a Social Skill I don’t possess?” or “Am I getting that uneasy, weirded-out feeling that tells me I might need help?” If it’s the latter, then I know I need to make a phone call or send a text or email to one of my Seeing-Eye People and ask for assistance.

Two instances spring to mind. One was last year when an acquaintance from my gym asked to borrow my car. I don’t know her very well, and she had just had an accident with her own vehicle, and because I badly wanted her to be my friend, I initially said Yes.

However, I got that uneasy feeling in the pit of my stomach that told me that was a poor decision. I went for a walk (I think best on my feet) and eventually it occurred to me that I should phone K. pronto. I also emailed my friend T. and asked for her thoughts. Over the sound of their eyebrows rocketing up into their hairlines, I got the message loud and clear that I must NOT be going about lending my vehicle to virtual strangers!

As K. put it, even her own sister has never asked to borrow her car, nor has she (K.) in our 28 years of friendship, ever asked to borrow mine.

Lesson learned.

Who you gonna call? Your Seeing-Eye Person!

The other instance was a matter of protocol: a few months ago, a friend’s baby was stillborn. She lives in another city and notified me (and a few others) by email, as she was understandably crushed & in mourning. I emailed her back my heartfelt condolences, but felt I should do more. However, being an Aspergian, I had no idea what was required.

So I phoned my friend A. (Seeing-Eye Person No. 3) and explained the situation, and asked what the protocol would be in such a situation. A. explained that often people want to talk about these things, and although I hate talking on the phone, I understood that it would be good to make an exception here and phoned my friend. She did, indeed, badly need to talk, and so we talked for about an hour together, and I came away feeling that I’d absolutely done the right thing, and helped her to feel better.

There are, of course, still a galaxy of things I do on my own and for which I need no advice or input: the day-to-day running of my work, what to make for dinner, how to run my home, when and where to exercise, what to watch on TV.

But slowly, surely, I’m learning that in some matters — particularly the Big Things that give me that uneasy feeling in my stomach, or that could have an enormous impact on my financial or social well-being — I can and should consult with my Seeing-Eye People and utter those words that come so hard to all us Aspergians:

“I’m having trouble with this. What do you think?”

The joy of just being yourself!

Lately I’ve talked a lot about “managing” your Asperger’s, and how to get on with other people.

All of that stuff is, of course, very important. You probably spend a lot of time on it in school and with therapists and other helpers.

No more lessons for now! Yayyyyyy!!!!

But one thing that people often forget is that it’s equally important to have time just to stop all the lessons, give your brain a little holiday, and just be YOU!

Sometimes I think people focus mostly on the things about Asperger’s that are negative or unhelpful (like meltdowns and difficulties with friends) and they forget the things that are really good about Asperger’s.

For example, you might find some of these are true about you:

  • the ability to concentrate on one thing for a long time
  • being good at math, music, spelling, drawing, learning a new language etc.
  • being a good mimic (which means being able to copy a voice or repeat a commercial accurately)
  • having an excellent memory
  • being very direct and honest when you speak
  • being good at video games or board games
  • knowing a lot about animals, insects, machines, computers etc
  • being very independent and able to amuse yourself

(These are just some of the “positives” of Asperger’s. There are loads more, and you can probably think of other good “Aspergian” things about yourself.)

Down-time is sooooooooooo important.

Anyway, even though learning good social skills etc. is very important, it’s also extremely important to spend time doing things that are enjoyable for your “Asperger brain.”

Sometimes you’ll want to do these things by yourself, and just have time away from other people (especially if you have spent a lot of time with other people lately!). I call this “down-time” or “recharging my batteries”, and I need a lot of it!

Here are some of the things I do for “down-time”:

  • turn off my phone
  • maybe get a snack that I like
  • watch TV or a DVD (I love Battlestar Galactica and The Big Bang Theory and documentaries about nature, animals etc)
  • read a book (right now I’m reading The Giver, by Lois Lowry. It’s kind of like The Hunger Games)
  • go for a walk or a bike ride or a run by the river that’s near my house
  • do a puzzle
  • organize my computer files or my paper files

And when I was a kid, I used to do these things in my quiet time:

  • reading
  • going to my room and playing with my toys (I had dolls) or organizing my things
  • sitting quietly in my little fort in the back yard
  • work on a hobby (building things, collecting things, writing stories, drawing)

I make sure I have some “down-time” every day and it helps keep my brain from “overheating.”

My hiking group, crossing a river!

However, another nice way to enjoy being an Aspergian is find other Aspergians to be friends with, or some “Aspergian-friendly” kids who share your interests. I have both kinds of friends: several of them don’t have Asperger’s, but are a bit “quirky” and they appreciate my smart brain and my weird sense of humour. 🙂

I also have a good friend named Jane who has Asperger’s and I like spending time with her because I never have to explain “Asperger stuff” to her — she just “gets it” automatically, of course. We walk around downtown, or go on nature hikes together, and talk about bugs, animals, skulls, fossils, and all sorts of things that other people might find kind of weird. But who cares? We’re Aspergians! 🙂

If you have a super-smart brain, you might ask your parents about joining an organization called Mensa. There are lots of Aspergians and super-smart people in that group and that might be a way for you to find your “herd.” (If you’ve seen a movie called The Ice Age, they talk about the idea of having a “herd,” meaning a group of people who like you and support you and do stuff with you. I love that.)

Some Aspergian kids get on better with adults (I certainly did). Adults can often teach you loads of new things, and are often more accepting of Aspergian kids than other “regular” (non-Aspergian) kids might be.

But … you must NEVER make friends with an adult without consulting your mum or dad first. If your mum or dad is helping you read this article, this would be a good time to stop and have a talk about that, if you haven’t discussed it already. It’s important to have a “herd,” but it’s WAY more important to make sure your herd has good, safe people in it.

Well, that’s it for now. As usual, I have to do some more work before the end of the day. And after that I’m going to the gym for a fitness class (exercise also keeps my brain from overheating!).

And then… guess what? It’s DOWN-TIME — just me, my cat, and The Big Bang Theory. 🙂 I can’t wait!

Talk to you soon!

–Asparagus Girl

Your “herd” is the people who love and understand you, just the way you are!