Showing posts with label Girls with Aspergers. Show all posts
Showing posts with label Girls with Aspergers. Show all posts

Wednesday, June 22, 2011

What Is It Like To Have Asperger's? The Tween andTeen Years >:p

This is Part II of my series on life as an Aspie.

Part 1: What Is It Like To Have Asperger's? My perspective.
Part 2: What Is It Like To Have Asperger's? The Tween and Teen Years. 
Part 3: What Is It Like To Have Asperger's? Adulthood  

You know? It's not the easiest thing for me to remember and write about my "tween" and teen years. It's not that I have Alzheimer's or anything, but so many of the memories are unpleasant... like getting-bitten-by-a-shark unpleasant.

If I hadn't had access to horses, I can't even imagine how life might have been. Let me start with puberty. Personally, I welcomed puberty like I would have welcomed the plague. I had known the "facts of life" for a few years by age 10, but rebelled by dressing and wearing my hair like a boy. I'm not sure if I believed that pretending to be a boy would somehow prevent my perceived downward spiral into full-fledged womanhood, but to my dismay  I was in 6th grade when I got "it." While I've heard stories about other girls celebrating the arrival of womanhood, I wanted to pretend it hadn't happened.


Because I tend to be very hypersensitive to physical stimulation, I was able to feel... "it." For me it was like wearing undergarments made of live, wiggling earthworms. I don't like the sensation of anything wet anywhere on my body, least of all...   I truly found the entire situation completely unbearable, but knew there was nothing I could do about it. It was hard to concentrate at school, to visit a museum with family, to walk, to ride horses, to live when "it" was present. When I had "it," I constantly thought about it. I didn't adjust to it over the next years, either. In my 40's, I have finally come to terms with it... and the laughable irony that I am currently going through peri-menopause has not escaped me in the least.

Socially the other girls were progressing as girls through the 6th, 7th and 8th grade are supposed to, yet I seemed trapped in a fantasy world of childhood somehow. Tweenage girls are not nice creatures, and just when I thought I was getting the hang of social structures, my understanding of other humans seemed to be pile-driven into the dirt as my peers went through the catty rituals of puberty. I had a few close friends who stuck by me. They told me I was "weird... but in a good way." I was just happy they would still talk to me!

Other girls... I just didn't "get" them. I couldn't pick out the hidden meanings of tone or voice inflection. I knew that in tweenage terms, "Nice sweater!" could mean either "I like your sweater," or "OMG - did you find that in some nerd's time capsule from the '60's?" As a result of my confusion, my responses to people's comments were often very inappropriate. I tried to copy the tones and inflections of other people's speech only to find further confusion when adults were offended in being addressed too informally or without respect, or when peers took offense to my intended compliments.

To this day I find I still sometimes inadvertently offend others. I generally think out everything I am going to say prior to saying it - including the volume, tone, inflection and word-choices... every time. Do you have any idea how tiring that gets in a fast-paced social situation? Is it any wonder I don't belong to the PTA? I still sometimes misjudge how others will perceive my statements... and then I have to go through the acrobatics of trying to smooth ruffled feathers.

Anywhoo - back to junior high school.

As a result of my lack of social skills and understanding, I was often taken advantage of. I was teased and I was bullied. I had my few friends, but I was fearful of making new friends because I knew I wasn't very good at it. I was horribly anxious and also very depressed.


Like many Aspies I was gifted - my strengths are writing and art. Writing... probably because I spent every free moment analyzing language and trying to figure out the magical equation for fitting in with my 7th grade peers, and art because when every word has a concrete picture associated with it, one finds they have a lot of excess and random pictures floating around in their heads that occasionally need to be taken out for a walk across a blank sheet of paper.

One of my favorite poems from that year of hell is:

Little horse of the golden glade,
All except my life is paid,
And now because that is done,
Across the fields of green we'll run.

We will run forever more,
Until we reach the golden door,
And when we reach that door - and through,
Only then life starts anew.

What? Doesn't every 13-year-old write death poetry? Unfortunately, death just seemed easier than dealing with my quickly-wilting social life.

It didn't get better when my family moved to a different state and I found myself in a new school with new kids... to my defense, I did make a friend. She rode horses too and apparently never bathed. Then I moved to a smaller school in hopes that fewer kids would mean that there were fewer kids to shun me. I did have a few friends through high school, but my social issues persisted. Since I lived my teenage life trying to be someone else, I'm sure other girls found it more than a little creepy when I was trying to be them. It wasn't that I wanted to be them per say, but from my analytical point of view I could see who the popular girls were. I figured that if I could act how they acted and say the kinds of things they said in the way they said it, that I would seem less socially undesirable. It didn't work, and I became even more depressed, unable to figure out what was wrong with me and why I was so different.

I involved myself with an area college theater group (who embraced me and my eccentricities completely) and with horses. While other teens tested their boundaries with alcohol or what-not, I hung out with a 60-something theater director with the energy of a 12-year-old and the attention span of a goldfish. One of my fellow-actors was a wonderful bisexual black man and the others were just wonderfully accepting of other people's differences. Acting came second-nature to me as I had been pretending to be other people for at least 15 years by that time.


I also developed a deep love for stories of the middle-ages or of fantasy worlds. I devoured the Narnia series, the Lord of the Rings and anything written in Olde English with a mad passion, and would receive some very unusual looks when I would speak or write fluently in Olde English. Apparently that talent won't win you acceptance and respect in the high school lunch room. Who knew? Looking back, I know now why other girls rolled their eyes... but it seemed like such a good idea at the time!

I hate to say I was a show-off, but I was. I was grasping at straws - trying to find something that the other girls would admire in me. I admired them for just being able to socialize and I wanted very much to be seen as talented and therefore (in my mind) as acceptable. I was memorialized in the yearbook my senior year as being "Most likely to write a screenplay called 'My Life At The Barn'."  Mission accomplished, no?



So, while I rode out the storm of depression, anxiety, social ineptitude and a stoically analytical view of the world around me, I did survive. If I had known then what I know now? Who knows? Perhaps I would have had 2 friends through those years! At any rate, college was much better for me both educationally and socially - but that is for a different post.

Cheers!



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Tuesday, June 14, 2011

Momentum - Asperger's and Learning to Ride a Bicycle


Learning to ride a bike can be a daunting goal for any kid, let alone a kid with Asperger's. Issues with coordination and balance can get in the way of each little success, and for those who tend to be anxious, the fear of falling, not succeeding, being teased by peers, doing a face-plant off the front of the bike, getting one's shoelaces tangled in the pedals, having a blowout doing 70, forgetting how to use the handlebars, snakes suddenly popping up from holes in the pavement, tipping over and unexpected elephants attacks can add to the worry of clearing such a momentous hurdle.



It's easy when you're a little kid. The chance of wiping out on a 3-wheeler on a flat black top are like, WAY less than for a stylish young lady learning to balance and control a 2-wheeler.



Bike riding can be as much of a right of passage for parents as it is for kids! It's another one of those things... when all the moms are talking about their kids and it comes up that your kid doesn't know how to ride a bike yet at age 8. Do you launch into a lengthy explanation about the psychological and physiological differences in children in the autism spectrum, or do you do what I do and just say, "Eh... the fact that she can't ride a bike yet is a simple reflection of the poor parenting skills we possess. We're cool with it." ??   (You should see the looks I get with that one... )
*insert maniacal giggle-fit here*



The first attempts, while exciting, also proved frustrating...



So Daddy stepped in for a short pep-talk.


And though no snakes popped up unexpectedly from the warm pavement, the task at hand seemed very upsetting for poor Iraq. Her own inability to instantly be able to ride a bike like Lance Armstrong resulted in a fair amount of frustration.


But after a short break to soothe her overstimulated senses... (and after mom hopped on the small "Barbie" bike for a very short, circus-esque trip across the blacktop to the sound of giggles and applause from her admiring audience) Iraq was ready to give it one more try.




The sweet taste of success propelled her around and around the blacktop, and when she was ready to stop, the bike was all but forgotten as she ran to her daddy for a huge victory hug!


And The Skink thought it was pretty cool, too!


May you make lofty goals and far surpass your greatest expectations without becoming too overstimulated along the way!


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Wednesday, February 23, 2011

The Call of the IEP, The Grapes of Aspergers, Crime and Punishment and Other Great Classic Stories of Parenting...

Now if that title doesn't suggest a future best-seller, I don't know what does!

Yesterday the hubby and I went in to help author our family's second IEP. In case you're wondering, IEPs are not like potato chips. You CAN have just one... We just have this little tendency to defy the odds and all sense of logic - but I digress.

It goes without saying that if you have a child with Down syndrome, you will likely be called upon to peruse the pages of an IEP on a yearly basis. If you have a child with Down syndrome and another child with Aspergers, you will find yourself with stacks of papers amassing in the strangest of places, detailing every possible way the little fruits of your loins are NOT like the other children. Good times!

Admittedly I went into yesterday's meeting with a bit of a chip on my shoulder. You see, last year I requested testing for Iraq in the hopes of getting an IEP set up. Unfortunately not only had her teacher never heard of Aspergers, but the school psychologist and the specialist who performed the testing didn't think Iraq seemed "autistic." Why do we keep coming back to the old "but she makes eye contact" thing? They also decided that since she tested within the "average" range on all the academic scales, that it was not necessary for them to provide any extra help. Needless to say, I was frustrated!

We were thrilled when we learned of the opportunity to switch Iraq to the same elementary school that The Skink goes to, and even more pleased to learn Iraq's 2nd grade teacher has experience with children in the autism spectrum... and yes, she's heard of Aspergers... and she even recognizes the "Aspie" things that Iraq does and understands why she does them AND she employs techniques to keep Iraq on track! Thank goodness. Yet going into the IEP meeting, I was ready once again to be told that Iraq had tested within the "average" range academically, and be asked the question, "Well, what do you want us to do?"

Much to my relief and consternation, that is not what happened. Yes - Iraq did test within the average range academically, but they also recognized that Iraq has some unique "qualities" that require more specialized attention and guidance. Wow! School officials that understand that a kid can have an IQ within the normal-to-high range AND have special needs! Oh my! These people may have not only stepped OUT of their box, but re-assigned their box as a place to put out-dated material! Call Big Brother and warn him that someone is thinking!

I can't tell you how happy we were with the meeting! (Yes - it's top secret information!) No... Let me rephrase that. I mean I can't find adequate words to express the joy I feel over being understood and listened to, and from having Iraq be understood (at least to the degree that the school understood that Iraq needs someone to invest lots of time trying to understand Iraq and that Iraq is a person who may not ever be fully understood but that the very act of trying to understand Iraq will be beneficial to Iraq's understanding of the world and to her academic life... understand?).

Is it strange that I am happy about getting an IEP for my child?

Anyway, we are happy.

It also came up that Iraq's kleptomania (impulsive stealing) is still alive and well despite efforts from both home and school to exterminate that nasty little issue. We noticed that the school has a Sheriff's Office liaison - a police officer who spends a fair amount of time at the school. The next time Iraq steals something (which will likely be today) she will be arrested.

Yes. You read that right. Arrested.

Call it tough love, call it imposing permanent psychological trauma on our child, but because we have exhausted every other possible deterrent we could think of, we are going to try it. Think about it. The kid steals regularly at age 7. This does not bode well for her future... or ours as her bank account, bail bond providers parents.

On a completely separate subject (just because I like tangents and I'm dragging you along for the ride for my own personal entertainment) I am reading Thinking In Pictures by Temple Grandin. If you have a kiddo in the autism spectrum, read this book! If you ARE in the autism spectrum, read this book! Even if you are neuro-typical and don't know anyone at all in the autism spectrum, read this book! It is amazingly insightful and a very interesting read!

* I am not receiving compensation of any form for the promotion of this book. If you are the author, publisher or a reseller of this book and wish to compensate me for this glowing review, please contact me as soon as possible and I'll let you know where to send the check.

I have mentioned in prior blog posts that I myself have Aspergers. Reading Grandin's book has proved amazingly enlightening for me. I never realized neuro-typicals were so weird! (Just a little Aspie-humor thrown in there). The title for starters - well... I never realized that people could think without pictures. Yes - every last word in my vocabulary conjures an instant visual association. Suddenly a lot of puzzle pieces from my past are coming together, like why it took me longer than other kids to learn to read a clock with hands, count money, and why to this day I still don't spell well. Prior to having a visual concept of what "yesterday" is (I now visualize 3 days from a calendar appropriately labeled "yesterday," "today" and "tomorrow" in that order) it was nearly impossible for me to understand the concept of the word.

Well, I think there might be some legal copy write issues with my rewriting Grandin's book here in my blog just to share my excitement with you over it, so I'll stop there and just reiterate my opinion that you should read this book! And they even have it for Kindle (which is how I have the opportunity to read it... it's not like I would ever have the opportunity to venture into the grown-up section of an actual book store... at least not without 2 kids griping incessantly over being dragged into the "boring" section!).

So I'll leave you with that. And because I usually put tons of photographs in my blog which makes me feel like I'm depriving my cherished readers of visual stimuli in this particular post, I will now overload your senses in one fell swoop with this:


Feel better?
What do you mean "headache?" Oh... sorry.


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Thursday, February 17, 2011

Aspergers and Girls, Girls With Aspergers and Everything In Between!

Current statistics suggest that autism affects 1 in 110 children and 1 in 70 boys. Those are amazing findings really, spurring a lot of people to wonder about the huge "spike" in autism over the last 3 decades. Honestly, I don't believe there has been as much as a "spike" as the statistics would have us believe. It is my belief that the spike has actually been in the proper diagnosis of autism, and not a huge rise in actual cases.



Only 30 years ago, we knew much less about autism than we do now. I think that literally hundreds of thousands of people with the disorder were lumped into the "Mentally Retarded" or "Mentally Ill" categories just a few decades ago. In fact I know a 25-year-old man - the son of some very close friends - who couldn't be more of an "Aspie" if he had "Aspergers" tattooed on his forehead and bore the name Sheldon Cooper (Big Bang Theory), yet he was diagnosed as ADHD with a possible personality disorder throughout his school years. He struggled, but never received special help since he was clearly very intelligent. His poor parents heard no end to the whole "He just needs to apply himself better" song and dance from doctors and school officials.

The statistics also suggest that far more boys are in the autism spectrum than girls. Although this may be true to some degree, I also believe that currently girls are less likely to receive a correct diagnosis of an autism spectrum disorder. In fact, we waited years to get a correct diagnosis for Iraq.

Why are girls less likely to be diagnosed with an autism spectrum disorder than boys?


This goes back to that age-old problem of medical science placing the vast majority of resources into studying males and simply assuming that females would obediently follow along in their presentation of medical disorders. This is why there is a push right now in the medical community to publicize emerging facts that heart attack symptoms are *different* in women than they are in men. The symptoms are different? It's freakin' 2011 and we're just telling people this now? Heart disease is the number 1 killer of women, but it took us this long to figure out that the symptoms in men and women aren't the same at all?

Welllllllllll...  The same thing is true for diagnosing many issues, including autism spectrum disorders. While some doctors are privy to this enlightenment, there are still many who are muddling about in the dark ages of demographic diagnostics. Here is a *very* simplified and brief list of differences:


Because females are wired to be far more emotionally and socially aware than males in general, the differences in the way autism spectrum disorders manifest in females can be rather remarkable.

From the time Iraq was a small baby, we told her pediatrician that we though something was amiss. The doctor who happens to be one of the best pediatricians in the North Dallas area would reassure us time and again that Iraq was well within "normal" parameters and was likely just 'sensitive."



When Iraq was 3, we took her to a specialist who slapped a diagnosis of Oppositional Defiance Disorder on her and showed us the door. When Iraq was 4 we moved from Texas to Virginia and took her to another specialist who felt she was ADHD. He insisted he did not see any of the "typical" signs of an autism spectrum disorder because Iraq made eye contact. (Don't you feel better knowing that an ASD in girls can be properly diagnosed based upon ONE symptom mostly present in BOYS?) Yeah... didn't think so!

When Iraq was 5 we took her to a different specialist in a different town. A female specialist. A female specialist who did her homework on the difference between boys and girls. To start, she gave us a diagnosis of PDD or Pervasive Developmental Disorder which is a rather non-committal term for a person showing some symptoms of being in the spectrum. At least we were finally on to something!

It took 5 more doctors of different specialties (the same awesome female specialist mentioned above sent us all around town) and another year before we landed on an diagnosis of Aspergers! Whew! What a ride!

Of course now Iraq is 7-years-old and we can really see the ASD behaviors now we know more about the diagnosis and what to look for.

atypical use of toys - lining up instead of make-believe play


The moral of this story is that if you are not satisfied with one doctor's opinion, get 10 more! Don't assume a doctor knows everything - especially as new information comes out every day. Don't assume that if you read a list of symptoms that any females were used in the study that determined what those symptoms were.

 Social issues

After all - it has taken us this long to make it publicly known that the symptoms of the leading killer of women - heart disease - are different in women than they are in men. Autism is not a leading killer, so it is safe to assume we still have a long way to go before autism spectrum disorders are properly diagnosed in girls as quickly as they are in boys.



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