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.

Advertisements

28 thoughts on “Diagnosis and Beyond: My Story (because you asked)

  1. Wow. Wow. Thank you for sharing this. I’m so glad you finally got an assessment and have been able to move forward. Your posts & tweets are interesting & entertaining. Wishing you the best!

  2. Wow, this is a truly amazing piece of writing. Thank you for sharing it. Your diagnosis story is so eerily similar to mine, although you are about 3 years ahead of me. I try and share stuff, but I am not sure I could have shared in the way you have. I am very grateful though, as I can see what is in store for me. I totally agree with your description of the diagnostic interview, it was harrowing.

  3. Thank you so much for that; I’m glad it helped. Neat that you saw some similarities. Yes, “harrowing” is a very apt word for the whole assessment process. The Nice, Gentle Man was not at all unkind in his questioning — quite the opposite, really — but it was absolutely gruelling to drag what I thought were my unique and secret behaviours out into the light of day, and to have him just matter-of-factly ask whether they were there.
    Do you talk about Asperger’s in your own blog? Feel free to put up a link to it here if you like!
    Thanks again for reading. :o)
    — Asparagus Girl

  4. Yet another great piece of writing! I was amazed as I read your story! I really appreciate you sharing all of this. You do so much for other Aspergians with this blog. Lately I’ve been more involved than ever with Autism and Asperger research and trying to do what I can to help those with it. Your blog has helped me so much to improve my way of communicating with my friends and other Aspergians I know, and I thank you so much for that! Also, I have a friend with a younger (10-year-old) brother with Asperger’s Syndrome and with the new knowledge my friend and I now have, we have been able to help his little brother in many ways. His little brother was sadly very bullied in school and elsewhere and had a lot of difficult things to deal with throughout his life, but over the last few months he’s gone from “troubled” to actually doing quite well! He’s also getting much more out of therapy than before now. And I’m optimistic that his life is only going to get better and better from here on out! 🙂 Anyway, I just wanted to let you know that your blog is really helping a lot of people! So seriously, thank you for sharing your writing! 🙂

    • Hi. Wow, I really don’t know what to say! I’m so glad that you’ve been enjoying my blog, and that it’s been so helpful. I’m very touched by your comments — thank you.
      I’m actually hoping to start doing some public speaking (gulp) and teaching about how to live well with Asperger’s — will keep you posted.
      Thank you again for your kind words.
      A.G.

      • You’re welcome! And thank you once again. 🙂 I’m wishing you the best of luck on your public speaking, that sounds awesome and I’m sure you’ll do great! 🙂

  5. Uhh, for a few years now I’ve been thinking weather I have asperger’s or not. I wasn’t really ”normal” in my lifetime. At 11-12 or so, I was like the different guy in class. After I switched schools, I’ve managed to be ”normal” with other people, but I have to be artificial.

    I have these rage attacks sometimes, maybe out of nowhere. I sometimes say stuff that offends people, and yet my stupid brain keeps thinking ”Oh, it’s fine, they won’t get hurt by it”… WRONG.

    Right now I’ve changed schools, and I have a huge quantity of friends, a really nice number, 0!

    I just can’t make friends, when I try, my brain feels like they are not interested in me, when they actually are (It’s like my brain’s social skills are unrelated to my reasoning, or something).

    I get really good grades, and can reason some stuff WAY faster than most people(Say history classes, social classes. Math is harder for me than to other people).

    I’ve started reading when I was 3 or 4, I was the fastest reader in my 1st grade class (Even got a prize for that!)

    I’ve gone thru phases, where I was thinking if I was retarded, stupid, just not normal (I’m writing this, I think I’m not retarded?)

    But the fun thing is, that at parties I can hang out with people (when they are not drunk), and they like me, but once they know me, I always do something stupid.

    It’s a really hard life, I’m currently a 10 grader in a high school, and the lack of friends is triggering weird stuff on me, suddenly I can have suicide thoughts, suddenly I want to do drugs, suddenly I’m very happy being like this.

    Anyways, it’s just scary, and I was wondering if anyone knows weather I have or don’t have asperger’s

    I’m too scared to ask anyone!

    • Hi there,

      OK, first things first: if you are feeling like you might harm or kill yourself, PLEASE call a Crisis Hotline immediately (Google it or look in the front of a phone directory, or call the operator [dial Zero on your phone] and have them connect you to one). The staff at those help lines are really kind and are great listeners, no matter what’s going on. (I’ve used one myself a couple of times, believe it or not!) They won’t ask for any personal information about you – you only reveal what you want to reveal.

      Sometimes people call the Crisis Hotline quite regularly, if they don’t have a family member or counsellor, and the staff are fine with that too. They want to help people, period, and this may be an answer for you until things settle down a bit.

      Second, do you have anyone you trust even a little that you could share some of your worries with? You sound so very alone, and that is a terrible place to be, I know. Is there a teacher at your school, or a guidance counsellor, or another staff member, that you trust even a bit?

      You don’t mention your family, and I know teens often don’t confide in parents and siblings for any number of reasons (I didn’t). How about a youth centre or YMCA or something in your community? Possibly a church (pick a liberal/social justice-oriented one).

      You’re also wondering whether you have Asperger’s. One good starting point is one of the zillions of online tests – for example, here: http://www.wired.com/wired/archive/9.12/aqtest.html. They aren’t a diagnosis, obviously, but if your score is in the “I might have it” range, that’s a very good starting point for a discussion with someone you trust.

      You might also Google autism/Asperger resources in your area – you don’t say whether you’re in a rural area or a city, but regardless, it’s worth checking those out. They may have youth groups you could join, or intake workers who can talk to you and help you get some answers.

      One more thing – do you use Twitter at all? It’s a really good resource for people who are feeling isolated, and there are a LOT of Aspies on there who have loads of “virtual” friends where they had none before. That might be a way to make at least one friend, for starters – my name on Twitter is @AsparagusGirl and you could start with me.

      I hope this is helpful. If I think of anything else, I’ll add it on here. Please let me know how you’re doing with this. And thank you for reaching out to me.

      Asparagus Girl

      • Well, the suicide thoughts never go as far as actually being close to trying, just that the change of schools (and country, I used to live in a south american country) has really been haaard on me. Its been like 5 months since I’ve been in this new school, and I only have half a friend (I honestly am not interested in being friends with this guy, but he’s like out of friends like me (but prolly not with aspergers, and my brain keeps rejecting making friends, idk why.

        I used to do therapy, I’m 100% sure she knows I have aspergers. I’ve never actually asked her what I have, but she told me a while ago that I had “something”. Due to her help I managed to get the friends I still have back home.

        I actually have a huge virtual profile with a fake name and ~200 friends.

        Yesterday I wrote as bad as I did because I suddenly fell into some kind of depresion day.

        It’s crazy tho, I actually managed to keep being totally normal until stopping therapy, I don’t know what happened.

        I’m trying to make friends, and manage to do the first steps, but then I disconnect. It’s annoying.

        I usually have all the simptons that aspergers is supposed to have (rage attacks, quickly learning to read, clumsiness, bad handwriting (I’ve heard that last one is supposedly a rare one, but might be related)

        I have a great relationship with my parents, but I don’t want them to think I’m different (although they might already know)

        I actually went to a church meeting group for a while, and made quite a lot of friends there, got invited to great parties due to them.

        I am also doing a lot of outside work at local schools to find people to meet, and get entertained.

        I’ll follow you on Twitter.

        I enjoyed reading the blog posts you make, really interesting, and helps me understand at last, what I am (I’ve been doubting weather I have or not aspergers for a while, but now the simptons are clear enough For me to go on the yes side)

        I really needed to tell someone, since it’s a hard time for me atm with the lack of friends and new language, country, city, school.

      • Hi,
        Oh yes, I understand about the “sort of suicide thoughts” — it’s odd, though: when I talk about these things with friends etc., they all say, every one of them, that they’ve had the same thoughts or wishes (even the people I think have it “all together” or whom I look up to!). I think it’s part of the human condition sometimes, and a very normal “go to” thought when you’re feeling down or alone or just fed up with the hassles of everyday life. You really are not alone in that! The important thing, as you know, is to realize when you’re having those thoughts and (like you did) do something about it — to reach out. You did the right thing.

        And I REALLY get it about the “depression day” or “bad brain day”… that happens here too. I just take a “quiet day” and do my own stuff (I spent Saturday playing “Angry Birds,” if you can believe it!) until I feel rested again. It’s important to give yourself permission to just have quiet time to recover & collect your energy after a lot of “social”. And you sure have a lot going on right now, what with moving from another country (!!) and a new school.

        I’m glad to hear you have a good relationship with your parents — and yes, they likely already know you’re “different,” as you say, and rest assured, they love you anyway, maybe even MORE because of that. 🙂 You will always be their “cub,” no matter what!

        Very glad to hear that you’re making efforts to find a group — it shows a lot of initiative on your part, and a willingness to just keep slogging through the difficult times to do healthy things. Some people just give up, and it is obvious to me that you don’t. I really admire that in a person.

        Thanks again for keeping on checking in here; it’s wonderful to see you on Twitter and I’m enjoying your posts and comments.

        Asparagus Girl 🙂

    • Hi, RandomGuy,

      I want to echo what Asparagus Girl said: Please call a Crisis Hotline & follow up on her other suggestions too, which I think are really great.

      Second, I want to tell you that sometimes life is hard for everyone, and you’re not alone in your feelings. Even the people who look like their lives are easy and they’re having fun also have scary, sad & lonely feelings & thoughts. It has taken me years to realize this and it’s easy for me to forget this, too.

      Third, please know that a lot more people care about you than you probably realize. I care & I don’t even know you (I don’t know Asparagus Girl either, except through her blog & tweets); but I’m writing because out of all the gazillions of words on the internet, when I read yours they cut through the noise enough that I wanted to reply to you. So you have a unique, sturdy voice & character that comes through even in one blog reply. (To me you’re not a random guy, but a specific guy!)

      I wish you the best in finding some answers & help to your questions & concerns.
      Sherry

      • I’d rather not call a crisis hotline, the chances of me actually doing something is low enough, it’s just that those thoughtsare there, but they come and go. I understand that it might not be the right choice. But I feel like it is the right for me (damn, suicide takes too much effort, I’m too lazy!)

        I appreciate that you consider me an specific person. That’s a really nice thing, thank you

        I honestly need a shoulder to cry on skmetimds, in my specific case it isn’t easy, I mean, for some people, it might be considered something bad to talk in the internet about this, who knows.

        On the good side of everything, in my effort to find my way around socially here (hopefully I will), i’ve signed into a lot of volunteer work. Today i’m going to help in an elementary school for a show they are doing, in a few days I’ll help out in a church.

      • Hey, great to hear back from you! Your email really worried me and I’m glad to know you’re keeping in touch.

        It’s absolutely your choice not to call a hotline; maybe right now that feels like “making a mountain out of a molehill,” or whatever. But please know that they’re there exactly for people like you, who are just thinking about suicide “sometimes” and are in a dark & lonely place. They WON’T think you’re stupid or overreacting or being a drama queen, believe me! (And neither do I, for that matter; this is serious stuff you’re going through!)

        I’m really glad to hear you’re reaching out by looking for volunteer work — wow! I’m really impressed, actually. You sound like a really neat young man (with a good sense of humour, btw!) and I hope you will find not only people who will appreciate your gifts and your help with volunteer stuff, but who will eventually become a “shoulder to cry on” and a friend or two (or more!) for you. Everyone needs at least one of those.

        If you scroll down a bit, you’ll find that others are starting to respond to your comment as well. You are so not alone, my young friend. You are absolutely a “specific person” and I am so glad that you landed here.

        I hope you had a decent day at school (I don’t know what time zone or country you’re in, but am assuming you had classes today!). Again, please stay in touch here.

        Warmly,
        Asparagus Girl

    • Thank you, I’m living in in suburban Maryland, closeish to Washington DC.

      I saw what you tweeted about me, thanks alot.

      I try to go around life with jokes, one is happier when he laughs with himself (And maybe at myself, but than I would get a rage attack at my self and that’s not gonna work (bad, forced joke, no need to tell me 🙂 ))

      The suicide thoughts have lowered ever since I wrote this. It’s like coming out, in a way, and it’s also a warm day, which I tend to asociate to being positive, so I’m somewhat cheerful, and I got thru some tests.

      I am really in doubt tho, do I really have asperger’s? Or do I have something different?

      I mean, I have some autistic behavours, such as always saying the same freaking thing for no apparent, or always speaking about the same topic.

      Yet, I’m way different in some aspects, like for example socially, I tend to want to be with people, but than I freak out and stay aside, but I’m thinking that miiight be related to some past experiences of being toooo much secure when meeting someone new, and scaring them away.

      It’s like my head is full of thoughts lately, ever since moving here and only being able to communicate with friends over FB or Whatsapp, and not being able to make any serious friends, only people who actually try to be my friend, and I just for some reason get to stay away from them, maybe I’m too picky, I used to have friends who listened to the same music as me and the same interests.

      I tried the test you gave me, the wired one, and it came out with 21, not enough to be considered autistic.

      Thanks

      • Oh, that’s a really pretty area — have you been out to see the cherry trees in blossom yet? We have a lot of them in High Park, here in Toronto — I should get out there this week and look at those too!

        Do your parents have health/medical insurance so that you could go and talk to a specialist about the things you’re noticing? It sounds like you have a lot of very valid concerns and that the guess-work is getting really frustrating. It sounds like you need some answers.

        Depending on your age and the disclosure regulations in Maryland, you may be able to go see an Asperger’s/autism intake worker at an autism centre without them being required to contact your parents, if that’s what you’re concerned about. Although, as you said in your other comment, you do have a good relationship with your parents, so it might not be such a bad thing to have them in your “corner” on this one, so to speak, when you’re ready for that.

        At any rate, it sounds like the “wondering” is (understandably!) wearing you out. I just googled “autism aspergers maryland” and got this link: http://www.parentingaspergerscommunity.com/public/501.cfm Maybe you’ll find some helpful places to start there.

        It also sounds like you’re trying new ways of making friends, and are interested in different sorts of people than you used to be — which is why you might be staying away from some people. That can be a sign of growth, actually — as your tastes and interests change, so does the kind of person you want to be around. My choice of friends now is very, very different from the choices I made even a few years ago! But it was hard to do, and for a while I didn’t have many friends at all. Just try to be aware of not rejecting *everybody* and isolating yourself completely. It’s a hard balance, and requires some investigation of your “pending friends”, but it is worth it. My new group of friends is smaller, but they are solid. And I also have a few friends from way, way back because they are good solid people who fit my interests now.

        See you on Twitter! 🙂

        A.G.

  6. Hello RandomGuy. You are doing great by writing down what you are experiencing. I want to echo my support of the previous advice given. Pardon my brevity. I am thumb typing on my phone. I felt disoriented by my rage attacks and help helped. Keep reaching out with questions. Your authenticness is respected and helps others, in my opinion. Thank you for being real with us.

    • Ugh, for some reason I posted a few comments b4, but my phone maybe decided not to post them

      Thank you guys for helping out, I’m happier than before, and I did the elementary school volunteer work (even though it’s hard to see people socializing, and one doesn’t know what to say), it was pretty good. It felt good helping around, set everything for this show they were doing, and also helped out with spanish language instructions (since i’m from a south american country, living in the U.S atm), it was a productive day.

      I’m really happy that you guys listen what I say, it feels really good to let things out at all.

  7. Self compassion oozes from this . Just drips and it is so wonderful to read a story of diagnosis that is empowering, kind and self-loving. It lifts my heart. Thank you.

  8. I am 56 years old, diagnosed with AS in February of this year (at the London Redpath Center!) after struggling to figure out what was wrong with me for all my adult life. I was reading an article in the National Post about AS moms and recognized myself. Went to the library and got every book about AS I could find and read them all in a couple of days. It was very surreal. I went to my doctor and told her I was convinced I was an Aspie based on what I had read and a couple of online tests I took. I wanted her to refer me to someone who could diagnose me. After she gave me one of those mocking, skeptical looks, she said she didn’t know who she should refer me to, that she would ask some of her colleagues and get back to me. Fortunately for me, I called the Autism Ontario office and spoke to the most lovely person about what was going on and she recommended that I call the Redpath Center. After my diagnosis, I took the report back to my doctor for my file and her reaction was funny in that she was taken aback somewhat (vindication!), sad in that she is probably representative of what most doctors think when an adult comes to them requesting to see someone about autism. Does the medical world think that only children are autistic? Do they think AS just appeared out of nowhere in 1994? Do they think children grow out of it? (Sorry, I’m a bit miffed still. I’ll never forget how hard it was for me to go into her office with the request and how idiotic she made me feel.) Anyway, like you , getting a diagnosis was essential for me because I had searched for so long with so many ‘almost but not quite’ diagnoses that even though I was 99% positive I had AS, I knew that I would always think that maybe I had gotten it wrong. It was also important as I have raised my children to be critical thinkers and until I had an official diagnosis, they thought “here she goes again”.
    I am finding it difficult to release myself from a lifetime of wondering what is wrong with me. I remind myself every day that there’s nothing wrong just different. Knowing that the reason I do certain things and feel certain ways is because of my AS helps to keep me from going into one of my funks but I find that I am still trying to fix/overcome my autism. I hope that one day I will stop beating myself up for not coping like everyone else, stop trying to fix what isn’t broken, stop feeling like I don’t belong in this world. Reading your blog and others like it keeps things in perspective and gives me that hope.
    Thank you and thanks for listening.

    • Hi,

      Thanks for writing. I can relate to your struggle completely! All I can say is that you will actually find that it gets easier to accept yourself, now that you know what you’re up against. It took me a few months to get used to it, but 5+ years down the road from my own diagnosis, I have to say I am more content in my own skin than I’ve ever been in my life.
      That’s not to say I don’t still have my really, really hard days. They will always be there. But now they’re there without the added burden of beating myself up about them & wondering what the !#$& is wrong with me.
      Keep working & hoping; it really, really does get better.

      Thanks for reading and for your kind comments. 🙂

      Best,
      A.G.

  9. Thank you so much for your blog! Can you please tell me where to start if you need an assessment? Would one start with a psychiatrist?
    My daughter is 16 & I am not convinced she suffers only with anxiety & depression as she has been diagnosed. She has many symptoms of high spectrum autism ( Aspergers) but not all. She struggles in school. Thank you so much for your help.
    Jeannie

    • Hi Jeannie,

      Thanks for writing — I’m glad this was helpful. 🙂 If I were you, I’d start with your local/nearby autism association. If you google “autism + your city/town/area” you should find something. Then explain your situation & see what they say, whether they can give you a good referral. Because your daughter is school age, you may also need/want a medical assessment to get educational assistance. Your family doctor, if he/she is a sympathetic/decent person, may be of use as well.

      Are there like-minded kids/young adults around that your daughter can hang with, people who have the same interests as her? I’ve found that that’s the key for kids on the spectrum: not just being lumped in with the Asperger kids, but having peers they can relate to, who do & like the things they do.

      Good luck, and let me know how things are going. If you use the email associated with this blog, I will write back.

      Best,
      A. G.

  10. diagnosis is so important, an I envy anyone who’s been diagnosed as a young child. I also thought I was disturbed and a failure, and the impact it had on my self esteem and my life was so bad, it was huge. I found out in my mid forties and was so ticked off I didnt find out earlier. now I have to live with the results of bad choices I made. I probably would’ve choosen better if I knew I wasnt a failure.
    especially growing up in a society that valued being like everyone else above all.
    females are so often not diagnosed or diagnosed too late. we wear our aspieness differently. glad you found out and good luck to you.

  11. Thank you. Reading your journey to diagnosis was affirming and powerful. You, like many others I have been reading in the last month since seeing myself on the spectrum in some way affirms how I have felt in so many ways. I love the images you use to illustrate the telling of your story. I feel sometimes like the shambles of those buildings, or ET trying to phone home, asking, “why, did you leave me here?” I’ve had the preliminary intake a week ago Saturday and today part one of the testing process. Part two will come next week, along with the results of my testing. I need and want the confirmation as well. The questioning for what is “wrong” with me has also been a lifelong journey. Misdiagnosed, bits and pieces of it explained by this or that diagnosis, but never was there a perfect fit till now. I grew up in a house where there was drinking, fighting, verbal and other kinds of abuse. All of these years (53 soon to be 54 in January) I’ve thought it was about the abuse, the way we all grew up and asked why I could not get a grip, why I thought the way I did etc. etc. and it was all chalked up to childhood by those around me in the medical profession, and I did the same, even at some level feeling there has to be something more. Over the past year I’ve causally looked at Autism information related to my work but felt that Autism meant severe challenges, and that did not fit me. I was resistant to exploring more after looking in so many other places. The turning point, a combination of seeing something on Facebook, listening to Temple Grandin, and being aware that there had to be something more as I watched my own kids struggle with social anxiety. I started reading everything I could get my hands on, and almost immediately felt like the authors, as well as those posting on the blogs had crawled inside of my head. Never before had I seen people describing what I have struggled to put into words. Not once, but time after time. Next Thursday I will know, yes or no, if Aspergers is my answer. It fits for so many reasons, including my sisters son who I recently learned is on the Spectrum, and the shared symptoms, OCD, Anxiety etc. Thank you for putting into words what it has been like, and for putting yourself out there for others as a shining light on the path. The person who is doing my testing is also a quiet, gentle soul, and though he will not say yes or no till next week when all of the data is in, what he does say about the challenges for adults on the Spectrum getting a diagnosis, lets me know that he does understand and gives his all to every person who walks in his door. ❤

  12. Hi there.
    I just came across your blog, because I was looking for some ideas about Lt. Cmdr. Data … 😉
    And here I am: Just fell in love with your way of writing. And I like to spent more time on it very much indeed. Thanks for sharing your story.
    Although teachers, classmates and I recognized that I was kind of weird, no one would have considerd me being “ill” or having a disorder. I was a know-all in school. I liked to be on my own. Had my special interests. Of course there were severe problems and challenges in school and at university. But I never complained about. I was used (and expected) to bite through. But I never really acted or behaved like all the others.
    My mother often said “I cannot make (or figure) this boy out.” Well, that’s probably the best “abstract” of me.
    A year ago it all began to make sense: With the diagnosis ‘Asperger’s Syndrome’ the team of doctors and psychologists showed me Ariadne’s thread for the labyrinth (=heap of ruins) of my life.
    Yours
    Aspie in a labyrinth

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