Autism Spectrum Disorder: Pre-Diagnosis

The CDC defines Autism Spectrum Disorder as a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.

A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. These conditions are now all called autism spectrum disorder.

That is a very broad list of conditions, and I feel it’s a blanket diagnosis that encompasses the symptoms without addressing the cause. However, I am not a professional. I am a mom that’s discovering more about my son and his unique way of doing things every day.

So let’s start with some personal history, and I’m going to glance over some of this because there’s a topic for another time. My husband and I had been trying for a wee babe for a few years, and we were excited to finally succeed, and devastated when we lost acardiac twins at 22 weeks… That was probably the biggest heartbreak of my life. We managed to get pregnant again, and I lost the baby at 10 weeks. I, again, was devastated. I landed in a program/research group that studied low dose aspirin in women who miscarried, and how it might help them conceive. So, got pregnant a third time, and did everything I could to be safe. No exercise (I did some before I lost my second pregnancy), healthy organic diet, and monthly checkups. At ten weeks, I went into the ER for bleeding, but the wee babe was alright even if I was panicking. I received a lot of needle pokes, blood draws, and we monitored him all throughout the pregnancy.

On the other hand, we lived in a shithole. The apartments were expensive, the area full of gangs, drug dealers, and those creepy guys that follow preteen girls home from school. There was loud bass constantly playing, and chemicals/cigarette smoke always coming into our apartment from the ones below us. I ended up spending several hours in a friends’ below ground apartment in a bullet proof vest while swat scoured the area for armed fugitives, my friends were security guards, and refused to let me leave without an armed escort once the area was cleared. I was pregnant with my son at the time, and truly, I wasn’t going to risk losing my little bear.

So, after nine long months of eating bananas (absolutely gross!!!) and drinking alcohol-free Pina Coladas (freaking daily craving), I had a very intense four-hour labor. The hospital was an hour away, and we got caught by a train… This was no normal birth, it was almost literally a four-hour long contraction. I was too dilated at the hospital to wait, so they rushed me to labor and delivery and said it was far too late for an epidural. I spent the last two hours up and down on drugs while my overexuberant son decided he needed to be born NOW. There were some complications, the drugs only lasted fifteen minutes at a time, and we were waiting for me to dilate more before they tackled the pushing part of the birth. My son got stuck, and his heartrate was dropping, there was nothing for it, I had to push or lose him. I pushed for all I was worth and my little miracle was born.

Why do I tell this part? Because I don’t know if there’s anything I did or didn’t do that could possibly have led to a later diagnosis of Autism Spectrum Disorder. All I know was I had a sweet little boy who refused to be contained in any kind of swaddling, and he slept on me more than in the box… Also… I ate two and a half dinners, and two giant slices of chocolate cake because I just made a human being!

Yes, I had my son immunized (actually it was done without my knowledge and I was a little angry that he’s not even five minutes old and he’s given an immunization shot… his immune system isn’t even functioning yet), and I made the choice to circumcise him, for no other reason than the care of foreskin in the early years. I felt it might be hard for him to get fully clean and there may be bacterial infections… So that’s my reasoning.

And I’ll say, I felt blessed. We didn’t have a crib, but we made a little box to keep us from rolling onto him at night, and he slept in the bed. Made midnight feedings easy since I was breastfeeding for the first few months. He only cried when he wanted something or was cranky. His moods were so easy to read and he never cried for no reason. I knew his cries for gas, for teething pain, for hunger, and for being tired. I breastfed for as long as I could, but he was eating more than I could produce, so we swapped to formula. At four months, he started trying solid foods and I tried the baby food, but was disappointed. Instead, he got a little of what we ate all mashed up, and he liked that a lot better. Overall, he was a very happy baby, I sang to him, we read to him, and his development was mostly ahead of schedule.

I’ve used holistic teething pills for him, they worked beautifully and I only used them when the cold rings and massages failed. He wore cloth diapers for his first two years, and honestly, we ended up traveling a bit. He was a dream baby on the plane, quiet, occupied, and I gave him a bottle when we ascended and descended to help with the ear pops.

So here’s where things get a little muddy I guess. My son, my sweet little bear who loved to play on the balcony and play with the cats had a hard time with people. I would take him down to where the other kids would play and he’d play with their toys, look at the art they drew in chalk, play with the leaves like a backhoe or bulldozer, but once the human interaction came about he would freeze. I showed him what to do, I asked if we could play and everyone really did try to include him, but he would get this look on his face, like his brain froze.

I thought maybe it was too much, so we did side by side play with kids, and I learned he was afraid of dogs (there was an unfortunate incident with a puppy, no one was hurt, but my son came out a bit traumatized), and I learned that my son was a little more capable with adults instead of children. Not by much, but he didn’t fully freeze.

Another side note here, my son showed an early interest in words and letters, so I spent time showing him how to write on one of those easel boards. He caught on quick, and in a matter of months he figured out how to count from one to ten up to a hundred. I never pushed him, never made him learn. We played, and he would bring me the chalks or dry erase crayons so we can write. My son could write his name and a handful of words before he could say his name.

We traveled halfway across the country every year to spend time with the in-laws. My sister in law has an autistic son, and when my son was about 19 months old we visited and I was so proud to show that he liked to write and knew his alphabet. Instead we were met with, “That’s nice, but can he talk?”

I was angry that his worth is by how many words he knows, and I did have the satisfaction that whenever anyone tried to get him to talk, he started barking at them because it was always when he was in the middle of something. I was defensive of my son, I knew he was different and I accepted that he wanted to learn before he focused on talking. Besides, I was quiet and introverted as a child too, so his only problem is not being their ‘normal’. I was angry when they suspected he was autistic, my son was way too smart for that, he just does things differently.

Maybe I just enabled it, I don’t know.

After we got back from that trip, my son spent three days in the hospital with a pre-asthma attack… He was on oxygen until he could absorb enough on his own, and I spent all three days in the hospital with him. He charmed all the nurses, and they kindly gave him an oxygen tank so we could walk around and see everyone. My focus shifted from some possible obscure diagnosis to a serious one of asthma, and he had to have two more attacks before he can be called asthmatic and get medicine for it.

Was I wrong to put off any kind of testing?

I was assured that at three, it’s still too early to tell, and he may just be slow on the social skills because we cuddle more than we talk. Life happened. I focused on loving my little boy, no matter his shortcomings, and encouraging his loves of construction vehicles, robots, and making up new words for things (we still use bacon steak, bus truck, train truck, bus train, and bus truck train). My son soaked up knowledge like a sponge, and I gave him new things every day. I tried hard to focus on his positive aspects rather than his negative, and truly, he was a happy baby and toddler. What did it matter that sometimes he wasn’t there in the mind when he met other kids?

To be continued...