April 1, 2012

A is for Asperger's

Asperger's. I laughed at that word the first time I heard it. I hope no poor child has gone to school telling everyone, "Guess what? My mom says I have Asperger's."

This is me

But, all joking aside, I'm writing this because I believe that if I had gone to a psychologist as a child, I almost definitely would have been diagnosed with Asperger syndrome. Don't believe me yet? Oh, you will. And it's pronounced AZ-perger's, by the way, but I'll call it AS for short.

I have a sweet, funny, unique, and brilliant nephew named Noah who has been diagnosed with AS. As you can imagine, it makes life a little harder on his parents, but you know what? I think it makes him more lovable and not a bit less cute. When I go to his house, he shows me his geode collection, his perfectly folded origami art, his medical textbooks, and anything else that excites his interest. About a year ago, I decided to read this Wikipedia article on Asperger syndrome. I thought maybe it would help me understand Noah a little better. Instead, it was like opening a window into my own mind.

I found myself saying "YES!" out loud and nodding my head in agreement as I read the article. It made me smile and laugh, and it even made me cry. I started reading my favorite parts to Jared and he laughed harder with every sentence. He asked, "Are you sure that's not just an article about you?" Not all the traits applied, and some disappeared as I grew up, but there are a whole lot that accurately described me. Let me share with you some excerpts that I can especially relate to (but beware, it's a long post):


  • "Characterized by significant difficulties in social interaction."
When I was in elementary and middle school, I never seemed to know the right thing to say, how to say it, or how to fit in like everybody else.
  • "It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Children with AS may have an unusually sophisticated vocabulary at a young age and have been colloquially called "little professors."
Although I struggled socially, I was always very advanced in academics and language and I thought I knew everything about everything. I was always the kid who raised my hand to say, "Teacher, you spelled that wrong!"
  • "Physical clumsiness [is] typical of the condition. . . . They may be poorly coordinated."
Maybe that's why I could never kick a ball straight . . . or hit a baseball . . . or learn a dance move. Only with a lot of practice can I become decent at any sport. Rock climbing is the only exception; I'm a born climber.

  • "Intense preoccupation with a narrow subject."
My goodness, yes. When I develop an interest in a subject, it can get intense. Even now, if I care about something, I research it to death. Even if it's something as narrow as learning how to reupholster a wingback chair, for example. As a child, I took this intense preoccupation to a whole 'nother level . . .
  • "Pursuit of specific and narrow areas of interest is one of the most striking features of AS. Individuals with AS may collect volumes of detailed information on a relatively narrow topic."
How about the notebook I kept in fourth and fifth grade completely full of Latin animal names? I memorized the scientific names of animals obsessively. Once, I even got up in a talent show and had the audience ask me the scientific names of animals . . . one of my finer moments, I must say.
  • "Although these special interests may change from time to time, they typically become more unusual and narrowly focused, and often dominate social interaction so much that the entire family may become immersed."
Yes. My whole family probably still remembers the scientific name of a cheetah, my favorite animal for several years. I honestly thought I had the monopoly on cheetah-loving. One of the questions I used to get most when I ran into people who knew me in elementary school was, "Do you still think you're a cheetah?"

  • "Speech may be unusually fast, jerky or loud."
I can't tell you how many times I've been told I talk too fast. And too loud.
  • "Fails to suppress internal thoughts."
Yep. My in-laws think I'm crazy. And inappropriate. And just plain weird. I think they secretly enjoy the element of surprise when I'm around.
  • "People with AS may not be as withdrawn around others as those with other, more debilitating, forms of autism; they approach others, even if awkwardly."
Awkwardnes is my trademark. I'm not afraid to approach people, but I get the feeling they're afraid of me.
  • "A person with AS may engage in a one-sided, long-winded speech about a favorite topic."
My husband could have told you that.
  • "Failure to develop friendships or to seek shared enjoyments or achievements with others."
Now this is where my heart breaks for children with AS.
  • "Childhood desire for companionship can become numbed through a history of failed social encounters."
It did. In third grade, I was in a new group of kids and I tried so hard to make friends. Then I gave up after being hurt one too many times and spent every recess alone in the very back of the field composing songs and peeing in the grass.

  • "Depression is often the result of chronic frustration from repeated failure to engage others socially."
In sixth to eighth grade, I decided to really try again to make friends and to be normal. I subjected myself to conversations about makeup, shoes, gossip, meanness, and even shopping all for the sake of trying to be liked. But it made things worse. As soon as I tried to stop being strange, I become more depressed than I've ever been.
  • "Many children with AS are initially misdiagnosed with attention-deficit hyperactivity disorder (ADHD)."
I wasn't actually diagnosed with this since I never went to a psychologist, but I remember my mom telling people that she wondered if I had ADD.
  • "Treatment attempts to manage distressing symptoms and to teach age-appropriate social, communication and vocational skills. Despite the popularity of social skills training, its effectiveness is not firmly established."
This brings back a terrible memory. One day, in fifth grade, my mom decided to send me to a short social skills workshop at my school. They gave us a quiz about what was socially acceptable or unacceptable. I correctly answered all the questions except "Is it good manners to leave a penny for a tip at a restaurant?" I said yes, but HOLY COW, I was 10 years old! At least I learned proper tipping etiquette, but the rest of the class was useless.
  • "The 'different-ness' adolescents experience can be traumatic."
True. Sometimes I wish I didn't have such a good recollection of my childhood, because I have a lot of bad memories.
  • "Adolescents with AS may exhibit ongoing difficulty with self care or organization, and disturbances in social and romantic relationships."
I skipped breakfast every day in high school, had a perpetually messy room, and dated the scum of the earth. Wait . . . that's everyone's high school experience, right?
  • "There is a predilection for adults to self-diagnose it."
Apparently.

Now for the good news:
  • "Individuals with AS often have excellent auditory and visual perception."
I do have quite an eye for detail and Jared has told me several times that I have super hearing.
  • "Talent in language."
I may not be able to sound cool or street smart, but I can memorize vocabulary and learn languages like it's nobody's business.
  • "Most children improve as they mature to adulthood. . . . Up to 20% of children may no longer meet the diagnostic criteria as adults."
If I weren't so content with my life now, I might head to a psychologist to find out.
  • "Some researchers have argued that AS can be viewed as a different cognitive style, not a disorder or a disability."
In many cases, I think this may be true.
  • "There is a contrast between the attitude of adults with self-identified AS, who typically do not want to be cured and are proud of their identity, and parents of children with AS, who typically seek assistance and a cure for their children."
I am happy now, but I still remember the stress I caused my mother.
  • "Simon Baron-Cohen wrote of those with AS, 'In the social world, there is no great benefit to a precise eye for detail, but in the worlds of maths, computing, cataloguing, music, linguistics, engineering, and science, such an eye for detail can lead to success rather than failure.'"
I majored in linguistics and it was perfect for me. My declared major before that was biology. I was also a math tutor in college. My nephew Noah wants to be a doctor, and I don't doubt that he can.
  • "It has been argued that the genes for Asperger's combination of abilities have operated throughout recent human evolution and have made remarkable contributions to human history."
In short, we're awesome.
  • "Capable of exceptional achievement and original thought later in life."
I hope so.

This is why I believe I have AS. And this is why I'm okay with it.

For the people who know me and were friends with me when I was younger, I'd like to know what oddities you remember. Don't be afraid of offending me. My childhood has made me strong.

21 comments:

  1. Thanks for sharing this post to bring us awareness about this condition.

    Look forward to your challenge posts!

    Twitter: @AprilA2Z
    #atozchallenge

    ---Damyanti, Co-host A to Z Challenge April 2012

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  2. AS runs so heavily in Eric's family... his nephew, his little brother, cousins, and uncles have been diagnosed with it. (Weird,I just noticed its pretty much the men who have it) Anyway, I've been really nervous by the fact that we have a high chance of having a child with AS but this post calms me a lot! I need to educate myself more before we start trying to have babies!
    Also, I didn't get to spend too much time around you but I've always thought you were the cutest :)

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  3. Well you know how I feel about you :). I'm sure I would have loved you just as much had I known you as a young kid. Noah is difficult, but at the same time he is one of the greatest blessings I think we could have ever been given as you are to your family. Knowing and loving you now just reaffirms what I've known now for a couple of years, Noah will grow up to have a happy and fulfilling life. Which is all I could have ever wanted for him :). AS is not a curse and as soon as people stop seeing it that way, life will be better all the way around for all of us affected by it.

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  4. I think you do/did have AS. The funny thing is, the weird things you did as a kid weren't weird to me. I wanted to be just like you!

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  5. I definitely remember you talking really fast with a profound vocabulary and I remember your drawings (I think I even remember a cheetah drawing) and I also remember thinking you had the greatest laugh. So hearty.

    I teach several kids with AS and one of them comes in once a week to (long-windedly) tell me about whatever book he is reading. It used to drive me crazy because I felt bad with nothing to say back and I have papers to grade. But then I realized he just wants to tell me and he doesn't care if I have nothing to say back. In fact, sometimes I grade papers while he talks and it doesn't seem to bother him. My favorite trait of his, however, is that during lunch he lies in a corner and takes a nap. YOU KNOW every kids there secretly wants to do the same, he just has the guts to pull it off.

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    1. Ali, I love this because I remember doing the same thing to my teachers. I even remember the look on one teacher's face as I sat there and quoted parts of my current favorite non-fiction book. It was probably unbearable to her, haha. My heart just fills up with love for the cute little kids like that now though.

      Oh, and by the way, it's no wonder why I had a hearty laugh around you. I've always thought you were completely hilarious (I loved the "Reproduction" song you sang at a YW activity once).

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    2. HA! I don't remember the "Reproduction" song! But I do remember having a BALL every Wednesday night at YW. We had such a good group of girls. Love reading all the responses to your post!

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  6. That cheetah picture is hilarious!

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  7. Wow, where'd you find these pictures? They sure bring back memories!

    Even being eight years old than you, I never thought you seemed unusual as we were growing up, and I thought it was really cute how you'd always teach the family about scientific names. How could any of us ever forget that "acinonyx jubatus" is the scientific name of a cheetah? :)

    Having said that, I agree with you that you would likely have been diagnosed with AS as a kid if you had been tested. I do remember you going through a stage where you were really gloomy for awhile (5th or 6th grade?), but you grew out of it. I also remember that I never realized you had a sense of humor until after returning from my mission when I hadn't seen you for a couple years. You must have started to understand humor when you were around twelve or thirteen years old. And of course, you have always been a fast talker although I'm curious to know at what age you started talking. It's often later than average for AS kids.

    If Noah can look forward to being as socially successful as you are when he grows up, he'll have a happy life.

    Oh, and make sure to post on Facebook whenever you update the blog because that's how I usually find out about it. Love you!

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    Replies
    1. I hoped that someone would slip "acinonyx jubatus" in here. Thanks.

      I think that the time you describe as when I first started to have a sense of humor was when I became more in control of my social abilities and started to have a lot more friends. I always thought the things I said were funny when I was a kid, but looking back on the jokes I remember now, they were quite cringe-worthy.

      Noah will be great, and he will do great things. You and Ashley are wonderful parents and will encourage his interests and imagination and everything will turn out fine. I love you too Joe!

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  8. I remember the cheetah phase really well but I don't remember thinking you were odd, just imaginative. Of course, I'm a little odd. My oldest daughter was scheduled for testing for aspbergers and we ended up cancelling it because she is so high functioning and already gets so much early intervention care that it seemed pointless especially because the imaginative part of her brain was what I was initially worried about. It is obvious in the last year that she is extremely imaginative and just couldn't properly communicate it before because of her speech problems. I don't see it as a setback at all now that her communication skills are improving so much. She is just a bright, imaginative special little girl.

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  9. Wow!! How very interesting!! I never thought you were "weird" and some of that really, really surprised me. I do remember how amazing you were at climbing and how much you loved cheetahs though :)

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  10. What a great post. I think one of the reasons so many kids are on the spectrum now is because people are finally realizing what the spectrum is.

    Kids with AS now can go to classes that really help them and I think awareness helps not just them, but everyone.

    Christine
    http://scraphappychristinescorner.blogspot.com/

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  11. I don't doubt it. I think you were one of my more interesting and fun friends. It's funny that even as I write this, I know you will probably be picking out all of my punctuation and gramatical errors. You have always been blessed beyond others in terms of talent. You may have said or done awkward things, one in particular comes to mind of when I first met you and you pretended to cry when someone asked you about your mom, but I absolutely loved and admired you for it. I think everyone would agree that things were more exciting with you around.
    I wish I would've realized how miserable you were with the "scum of the earth" back in HS. We all thought you were happy and in love and didn't want to say anything. If we would've been honest with you about what we all were thinking, you probably wouldn't have had to go through such misery. I'm sure you became a better person because of it though. You have a way of looking on the bright side. I've always wanted to be more like you.
    You're admirer,
    Megan ( ;

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    1. Oh Megan, you're so sweet. That almost made me cry. I'm glad that you mostly have good memories of the things I'd do. Luckily, by high school when we met, I wasn't as clueless and I was able to have a lot of great friends (you being one of my all-time favorites, of course).

      I definitely wasn't happy in my relationship with Mr. Manipulative, but it taught me not to be so naive and trusting, which was probably a good thing. I wish I had known that everyone else could see the creepiness, but it might have not made a difference anyway because sometimes you just have to figure things out on your own. I should add, though, that I was still happy when I was with my other friends. It's not like I was all-around miserable or anything. I love you Megan and I always will!

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  12. Wow. Looking back on what I remember of you, I can totally see what you're talking about. I remember the cheetah phase, and I remember you being a little odd, but hey...that's kind of a Swindler family trait anyway. ;-) I didn't see it as anything unusual or wrong--I just noticed that you had a distinctive personality that I found quirky and lovely. You are an amazing woman, Lisa, and your mom is very proud of you, I am sure. You and Noah are incredible people!

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  13. I don't just have "mostly" good memories...All my memories with you are pretty wonderful. I can't even think of one upsetting or even unhappy memory.
    I would never have thought you clueless. You are still one of the most intelligent and talented girls I know. I would even bet that we would've been fast friends in elementary. You are just one of those people that makes those around them feel comfortable. That's why you and Meg were always the girls I called.
    It's nice knowing I wasn't the only one who felt a little different. I always thought your different was cooler than mine though. Does that even make sense? I don't think I will ever stop thinking of you as the hilarious, beautiful, outgoing, talented and fun person that you always were. Highschool was only fun because of friends like you. Seriously, you just seemed to get me.
    No further comment on the whole H.S. dating thing. Because really, who wants to remember the awkwardness? We have too many fun times to look back on anyway. I still laugh thinking about the tree doorbell ditching and changing signs to say dirty/funny things.
    Love you too Lisa!!
    Keep the great posts coming. I love seeing you as a wife and mom. You were ment for such things.

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  14. Lisa, everything you say makes perfect sense. You have always been a gifted child/teen/adult. And genius has always been associated with unusual behavior. (I thought your cheetah phase was a very cute obsession of a very smart kid.) You may know that Einstein didn't speak until the age of four, had few friends, was obsessive about his work and is now considered by many to have had some mild form of autism, arguably Asperger’s Syndrome.

    BTW, I read recently that there is now solid evidence that people with autism have more neurons than normal people. Check this out: ScienceDaily (Nov. 8, 2011) — A study by researchers at the University of California, San Diego Autism Center of Excellence shows that brain overgrowth with autism involves an abnormal, excess number of neurons in areas of the brain associated with social, communication and cognitive development. Read more here: http://www.sciencedaily.com/releases/2011/11/111108200522.htm

    In other words, people with AS are just smarter than the rest of us. So, if one has to have an unusual condition/difference/cross to bear – and don’t we all – being unusually smart is clearly not the worst thing to have.

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  15. What a wonderful post Lisa! Thanks so much for stopping by my blog and sharing the fact that your A post was about Asperger's. Being on the spectrum, in many cases as far as I can say, is a gift. I wouldn't change my son for the world. Thanks for sharing your experiences :)
    Cheers,
    Jen

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  16. Stumbled on your blog from kirsten over at Quirky:) I am aspie too and no the word is not flattering:) You need to read ASpergirls by Rudy Simone if you have not. It is the best book I have found thus far describing A.S. in girls. I have two blogs chronicling my journey. Aspie audrey has many sites and resources you may find helpful on the top pages but Acuiring balance where I go by this name- I update more about everything in life. Welcome to the glorious family of differences. My son and daughter have AS too and my youngest has sensory overload.http://www.aspieaudrey.com/
    http://acquiringbalance.blogspot.ca/
    I can relate to everything you said. We had similar experiences:) I wish you well on your journey!

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  17. Hi Lisa
    I am new to your blog but really like your writing.
    I have a daughter, with Asperger 16 years old. I can say life is not easy for her,especially ,but also for us the parents and for her younger sisters. It's good to hear that you have such lovely relation ship with your siblings I deeply hope the same for my children.

    Are you familiar with the blog of Penelope Trunk ? she writes about lots of things including her Asperger. You might find it interesting.
    here is the address
    https://mail.google.com/mail/u/0/#search/penelope+trunk/13a62f69b60d2821

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