Adventures in Asperger’s-Part 1-The Diagnosis

By Jennifer

My 5 year old son was diagnosed with Asperger’s Syndrome a little over a year ago.  It was one of those things for my husband and me where we just knew that something wasn’t “right”.  Though we would find that we would have a hard time getting anybody to see it like we did.

As an infant, our son was fairly typical- he ate, slept and pooped like any other infant does.  He opened his eyes, looked at stuff, made noises and otherwise developed along a fairly normal trajectory.  Then, as a toddler, he still seemed fairly typical.  He talked and played and laughed a LOT (in fact, most all of the video I have from him as a toddler is of him belly laughing at different things.  His laugh is infectious and one of my favorite sounds in the whole world.).  He was, however, slightly delayed in the typical milestones like crawling and walking.

When he first became mobile, he didn’t start with a normal crawl.  He would do this army drag kind of thing across the floor as if he had no legs or as if they had been severely mangled and had been rendered useless.  Then, after a while, he finally got the hang of crawling the proper way but that must not have been fun enough for him because he would “trick it up”.  He used to like to move his head from side to side while he was crawling.  I don’t know if it made him dizzy or what effect it had, but he clearly seemed to enjoy it because he did it all the time.

It took him a good while before he was comfortable walking.  I don’t think he really started walking well until about 18 months.  But, by then he could really cover some ground.  He was tough to keep up with and he made me a nervous wreck because he had no regard for sharp corners on tables or shelves or anything else that could harm, maim, cut or break him in some fashion or the fact that his balance still wasn’t all that great.

It was about the time in between crawling and walking that we really started to notice his quirks.  He would get down on the floor and really study the screws in the bottom of his jump-a-roo and he would intently explore the feel and texture of them with his thumbs.  He explored everything with his thumbs.  Then, he found something on the bottom of the jump-a-roo that would spin.  I think it was a washer on a screw or something and he would spin it over and over and over again with his thumbs and this would give him hours of joy.  In fact, anything that spun would entertain and delight him for hours.

Then we stated to notice that he would compulsively compare things.  For instance, he would crawl from the living room to our bedroom and back again all the while looking upward so he could compare the ceiling fans in each room.  Keep in mind, he was less than 2 when he was doing this.  It just seemed “odd”.  I never saw any other 2, 3 or even 4 year olds doing this.  Most other kids never bothered to notice the fans at all.

We knew his behavior was little bit quirky, but we somewhat disregarded it until his 2 and 3 year old behavior started to become so rigid that it would induce tantrums which caused us to start having to alter our plans periodically because he would get too worked up and we couldn’t reason with him or calm him down.  He was completely irrational in our opinion and we couldn’t understand how a kid that was seemingly so smart wouldn’t listen to reason.

This is when we really started to take notice.  But, we kept getting the same basic responses from other parents – “Hey, he’s a three year old!  They have tantrums.  That’s what they do!”  OK.  I understood that, but his somehow seemed different from a typical two or three year old tantrum, though we couldn’t pinpoint why exactly.

I should mention that we were comparing him to his older sister, somewhat unfairly, I suppose.  But, she was our only real frame of reference.  She is a “typically developing” child as they say, but she was so far on the other end of the spectrum with being compliant that we knew we weren’t really getting a good comparison.  She was so well-behaved and sweet and somewhat abnormal in her exemplary behavior.

But, I think back to the time at the beach when he refused to go out on the beach because he couldn’t stand the texture of the sand.  He would only wear certain bathing suits if he liked the design, but more often than not, he required ones that didn’t have a design of any sort on them.  He didn’t want to wear his shoes.  He wouldn’t wear his hat and getting sunscreen on him may as well have been like pouring sulfuric acid directly on him (I should mention here that my son is a very, very fair redhead and that wearing a hat and sunscreen is absolutely non-negotiable).  He was, in a word, rigid.

At home, he would only wear certain pajamas, again mostly if they didn’t have any print or designs on them.  He would throw a gigantic fit if you tried to put him in a shirt he didn’t like.  He would freak out whenever I would wear a tank top.  To this day, he still calls it a “bad shirt” and he wants me to wear something over it.  When we would ask people “don’t you find that odd behavior?” their reply was usually “maybe a little, he’s just very smart and very particular about things.”

It was the staggering number of other things like this that started to add up that finally got us to take action.

After hearing from the pediatrician at his 3 year check-up that he was “perfectly fine, just intelligent and highly inquisitive” and after hearing from everybody else that “he’s just a three year old”, we started scouring the internet for articles on Oppositional Defiance Disorder, ADHD and autism, we were starting to suspect that his issues lay somewhere on the autism spectrum.  It’s just that he laughed and talked and looked us in the eye just fine and the articles on autism seemed to focus on the non-verbal, non-engaged, more severely affected autistic individuals, which left us confused.  Was he or was he not autistic?

Still, we had our suspicions and after an exhaustive search, we finally found a doctor in our area that would test him for autism.  Now, it wasn’t a cheap process and insurance didn’t cover it, so we had to save up for a while before we could take him back for the actual testing after we had the initial consult.  Meanwhile, we blew up the internet with searches on autism and eventually Asperger’s.  We felt pretty certain what we were dealing with before he ever had the first test.

Flash forward 6 months and we were sitting in the doctor’s office awaiting the results of the Cognitive testing she had performed.  When she came in she didn’t even beat around the bush.  She started the conversation by looking at us and saying “Yes, it’s Asperger’s.  Not a doubt in my mind.”

Now, you might think that we would have been disappointed or a little bit sad or scared, but the truth is that we felt vindicated.  We knew it all along.  Now, this gave us a formal diagnosis that we could use to his benefit.  Now we knew what we were dealing with and we could start taking action to help him.  It was actually a big, giant relief.  We weren’t crazy.  We were his parents and we trusted our gut and I am so very happy that we did.

It makes me wonder how many other parents are out there struggling to make sense of their child’s behavior and know that something isn’t connecting quite right, but can’t seem to get it figured out.

I will be writing a regular series on my experiences with parenting a child with Asperger’s Syndrome.  I hope with all my heart that I will be able to help somebody along the way.  And if anybody has any insight or tips for me for dealing with Asperger’s, I implore you to please share them here with me and anybody else that might find them helpful.  Knowledge is power.

Stay tuned for Part 2 of Adventures in Asperger’s-The Plan of Action.

2 comments on Adventures in Asperger’s-Part 1-The Diagnosis

  1. Chelsea
    July 2, 2013 at 11:19 pm (5 years ago)

    I remember him being fascinated with the texture of everything even before he could walk!

    Here’s the link I promised to another blog about a Mom’s journey through her kid’s autism:

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