Understanding My Son

First, let me give you a quick update that we finally had the ARD meeting for John and have his accommodations in place at school. I was extremely impressed with the district and all the individuals involved. They genuinely seemed to care about John's success and wanted to make every effort to help him achieve it. Every accommodation I asked for was granted, including many that I had not thought of myself. He has also begin receiving social therapy and organizational skills therapy. It has only been a month, but I can tentatively say that we have seen some improvement already. We still have far to go, but we will get there.

Now I want to take a minute and explain a few things about Aspergers Syndrome. Since John's diagnosis, the large majority of my friends have stated that they didn't know such a condition existed, let alone what it is. Please indulge me for a minute as I try and explain what exactly John has and how it affects him and our family. I will also give some insight as to how I came to suspect Aspergers in John and what led to our having him tested. Many of you have privately asked me about that, as well.

You can Google Aspergers and the amount of information that pops up is both overwhelming and confusing. Aspergers is defined as high-functioning Autism. However, there are several distinguishing characteristics that set it apart from typical Autism, making it a distinct diagnosis, such as social disabilities and high intelligence. Most Apsies tend to be quite cognitively advanced. Not all Aspergers symptoms appear with each child. Aspergers is much like a fingerprint. Every Aspie has the same basic outline and design, but the fine details and aspects of the syndrome differ with each child and are unique to that individual. No two Aspies are identical. Since you can read the science behind it on your own, I won't bore you; let me just tell you John's story.

What was my first clue?
When John was four months old, a time when typical (I purposefully use this word rather than "normal") babies begin to smile and react to the facial expressions and vocal intonations of those around them, John did everything he could to avert his eyes. He would look away from us and refused to make eye contact. He never smiled. He was completely indifferent to the emotions we expressed. I remember looking at my mother one day after we had, to no avail, attempted for some time to get him to smile at us, and asking her point blank, "Mom, do you think my son is Autistic?" John showed little or no reaction to happiness, kisses, smiles, etc. In fact, the only emotion he ever exhibited was frustration. He cried non-stop, all the time. And I mean all the time. My husband and I used to "joke" that if John was awake, he was crying. This lasted until he was close to 18 months old, when his language acquisition began to really accelerate.

One of the hallmarks that distinguishes Aspergers from typical Autism is language acquisition. Autistic children are typically very slow to speak and many require speech therapy and intervention to acquire this basic skill. Contrarily, Aspies acquire language more quickly than most children and tend to speak in complete sentences sooner than their peers. John was no different. By 15-16 months, he was stringing 4-8 words together to form complete sentences. At 20 months, he used the word "contraption" when telling me about his Bob Builder toy. It was at that moment, I realized my son most likely was not Autistic, but rather had Aspergers Syndrome. I will never forget it.

Another hallmark of Aspergers is the use of large or unusual words when a small one will do. They tend to speak quite formally as if they are at a business meeting or a fancy dinner party. John has consistently done this and continues to do so now. A few weeks, ago, I asked John if he was hungry. Most kids would just respond with a simple "yes or no". John actually replied, "No thank you, I'm not hungry right now, but I would care for a drink, please." Care for a drink??? His sophisticated speech patterns amuse me now. I think it makes him special.

What were some of the signs along the way?
One trait that Autism and Aspergers share is inappropriate play with toys. Since John was my first-born, it was not immediately apparent to me that he was different because I had no basis of comparison. In fact, many of these clues  were not obvious to me until my second son was 18 months old and I observed "typical boy play"

For example, John was obsessed with cars. (Preoccupation with one subject to the point of obsession is another distinguishing hallmark of Aspergers. At that time, for John, it was cars.) At 18 months old, he began to take his hot wheels and line them up in perfectly straight lines on the stairs. We found this amusing and would tease him by nudging just one car out of place and he would immediately, without expression, move it back into it's precise position. Typical boys drive the cars and make vroom-vroom noises. Not John. Another clue was his preoccupation with my hair. I have long, straight blond hair. When typical children get a hair on their hand, they shake it off or wipe it away. John loved to get a hold of one strand of my hair and he would sit for an hour and stroke it, examine it closely, etc. He was fascinated. At the time, I had no idea that was odd. Now I wonder how I could not have known. Maybe I didn't want to.

Other Aspergers signs that were clearly apparent, but seemed benign at the time, were his hyper-sensitively to external triggers. The Aspergers diagnosis includes a sensory disorder making children hyper aware of sound, light and noise, as well as disproportionate pain responses. John would scream uncontrollably if his environment was overstimulating to him. I quickly learned that very often I needed to just put him in his bouncy chair in a dark and quiet room to let him calm down. I just assumed my baby must be introverted. He was a horrible sleeper. While he slept through the night at 10 weeks, he was a ridiculously light sleeper and would wake if a gnat flew in his room. He required long naps in the afternoon, and would wake at the butt crack of dawn. His sleep patterns were consistently inconsistent. I now know this is typical of Aspergers. At the time, I thought he was just a fussy baby. To this day, he has difficulty with sleep.

As John got older, he would wildly overreact to minor bumps and bruises. He would scream and flail about as if I was attempting to hack off a limb with a dull, rusty blade. I assumed he was just a "spirited" child. I realized something was "off" when, at three years old, he fell against the coffee table and split the back of his head wide open, requiring six stitches. Initially, he let out a horrific scream, which I now understand was just from the fear of having fallen. After that, he lay perfectly still and did not cry at all. Even the ambulance EMTs told me they were "amazed" at how brave he was. He was alert and talking as if nothing was wrong. Meanwhile, his head was gushing blood. At the hospital, he didn't cry until they stitched his head up. At the time, I thought it was because he was in pain. Now I understand that it was out of fear from not understanding what was happening as well as the over-stimulation of the intense bright lights and loud noises and smells in the hospital ER.

Because of their sensory disorder, Aspies overreact to mild pain stimuli, but have a unique ability to shut off their pain receptors to extreme pain that most typical people would find intolerable. This was evidenced again when John was in first grade and broke his arm. It was broken in three places, but the only way I knew it was broken was because John didn't cry. John doesn't cry only when he is really truly hurt. This may sound like a blessing, but in fact, Aspies are less able to tell when they have a serious injury or illness. Things like Appendicitis may go unnoticed until it's too late. John will always have to be extremely vigilant about his health.

Were there any major red flags?
In one word... yes. Early on, John had inconsistent and irregular stools. He would often go for days, sometimes weeks (he went as long as three weeks once) without stooling. Multiple doctors did x-rays, rectal exams, prescribed stool softeners and other medication, but no one ever really had an explanation. James used to take John outside and make him run (like you would a dog) because that tended to help to get his system to work. Doctors told me he had chronic constipation. I had little option but to take their word for it.

As John turned school-age, the condition worsened. Eventually, he became unable to tell when he had to go to the bathroom. In actuality, I don't think he ever had a natural urge to "go" which is why he would hold it in for so long. Soon, his stools were up to three inches in diameter. Even my husband agreed this was not normal. We went to another new doctor. This one listened to me. We had him tested for Hirschsprung's, Cystic Fibrosis, Crones, Celiac, you name it. He was sent to the hospital for invasive and painful testing. Everything we tested him for came back normal. Once again, I was told he had chronic constipation and he would be fine. My husband began to doubt me. I think he thought I was a hypochondriac had Munchausen by Proxy. No matter how many professionals told me my son was fine, my mother's intuition was literally screaming at me that something was wrong. It was almost a compulsion to find answers. No one believed me anymore. I began to doubt myself. I finally told John, this was just how God made him and we settled into a routine of having him sit on the toilet every other day. John could poop on command. Who does that??? We would say, "go to the bathroom," and 15 minutes later, he would be done. We did this for YEARS.

It wasn't until this past summer of 2012 when John was officially diagnosed with Aspergers that I learned there is a concrete connection between stooling issues and Aspergers Syndrome. Many Aspies suffer with the same chronic issues John has, and being unable to determine they need to use the bathroom is quite common. I cannot emphasize enough the relief I felt at finally, after 9 years and multiple doctors, to not just have answers, but to know that my instincts as a mother were correct. My husband had questioned me and I had questioned myself to the point of a severe inferiority complex and self-doubt. I now realize that God gave mothers that innate instinct for instances just like this. I knew something was wrong with my child. I just knew it. I still can't explain how.

What were the social clues?
One of the main ways Aspergers is distinct is that it causes extreme social disabilities. Aspies are incapable of recognizing social norms or communicating normally with peers. This inability can lead to them seeming "weird" or "different," often making them an outcast. Interestingly enough, being an outcast is acceptable to many Aspies because they do not like the stress of having to try and communicate with others or build relationships. They prefer quiet and solitude.

For John, it was apparent immediately in preschool and continues to this day. He cries easily in class, is easily and quickly frustrated, overreacts to minor issues, under-reacts to large issues, speaks tersely and rudely at times to both peers and adults, has difficulty relating to peers on the playground or during games in PE, struggles with rules and socially acceptable behavior, and desperately needs a strict schedule. Much of the frustration stems from simply not understanding what is expected of him. For example, in most developed countries, it is understood that when you meet someone for the first time, you shake their hand and introduce yourself. Imagine if you were suddenly told that what you were actually supposed to do when meeting someone new was to say your name and then do 25 jumping jacks. You might laugh because the thought of that as a "social norm" is absurd. However, this is how John's brain perceives every single social norm that you and I take for granted. Shaking hands, hygiene, taking turns, speaking politely, eye contact, etc., ALL seem absurd and uncomfortable to John. He doesn't understand the need for those things. He never will understand. Just like you and I had to learn and memorize history, John has to learn and memorize social norms. He will never understand why he has to do those things, he will just learn that he has to. I can't imagine how hard that must be for him.

If you have stuck with me this far, thank you for reading this and believing that my son and others like him are important enough to take the time to understand. There are so many other symptoms and factors that I simply didn't have the time to mention here. If you have additional questions about John, or Aspergers in general, please, do not hesitate to ask me. If I don't know the answer, I can probably point you in the right direction. And, perhaps most importantly, if you currently feel that there is something going on with your child, whether it's Spectrum-related or otherwise, please, please trust your instincts. Never stop fighting for your child. You are their greatest advocate. You are their voice. Please share this blog with anyone you feel it might help. Thank you and God bless!