Birth & Parenting Series (20): Autism Diagnosis for a Toddler

This is our 20th post of guests sharing their birth and/or parenting stories. See the other 19 posts here. They range from homebirth to epidural, homeschooling to bottle feeding. Today’s post is written by Nicole M, mother  of a preschooler who was diagnosed with Autism. It’s not that simple, though, and her journey will be shared in a three part series over the next few Fridays. Read, learn, and appreciate that every child has his or her own path, taking their parents with them.

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Early Signs and Seeing His Differences

In retrospect, we probably had a lot of signs.  As a baby, he was fascinated by words and labels and would stare at those constantly.  We joked he was going to be a tort lawyer since so many of those words were various warnings on baby products.  Early on, he would make a sound that sounded like “ay, me” a lot.  Also cute.  At one point, he picked up a chant: “good, good, good…” which he would babble by himself.  In a lot of ways he was an insanely easy child: he would play by himself for long periods of time, and didn’t fuss too much about going to bed.  The worst part was the teething, which was monstrously early and often (a family trait) and the ear infections we thought would never clear, that eventually did.

As our son became a toddler, we noticed how super smart he was: he knew his alphabet early, was reading everyone’s names in his class before the age of 2, and was coordinated enough to put on his own snow pants very early on.  But he did do some odd things, like biting, often during transitions, and never the same child twice.  He knew better, and could recite what his teeth were for (eating food).  The biting would come and go, and as far as we knew he was developing more-or-less as usual because that is normal for toddlers to do sometimes.  The worst thing was his speech: it was garbled and his vocabulary seemed limited, but he seemed to understand much larger, more advanced words than the average baby.  So we could tell he was smart, but he couldn’t communicate effectively.  When the school would mention it, the doctor would say he was at the low end of normal so we should just wait and see.

I remember the first teacher’s conference when we were told there was something wrong.  He was about 3.5 and the fall before, he had had yet another good conference in terms of development.  This time, I was told he was still parallel playing.  I was stunned because we were told  he’d started playing with the other kids, but what had happened was he was playing near others and he was so popular (all the kids liked to play near him) they had been assuming he was playing with, not near.  This did not bother me too much…maybe he needed more time.  Then they brought up the scissors.  “He cuts toward himself!” they complained.  These teachers, bless their hearts, were single, childless women.  I had volunteered in kindergartens where the children had never touched scissors, glue, or crayons before attending school.  I asked them, “Does he hurt himself?  Is he accurate?”  They had to admit he was good at cutting.  I saw this as a sign that they were too sheltered and what was “normal” escaped them.  My aunt, who taught from K-12 for many years didn’t see any problems, really, either.  Like me, she focused on how smart he was and how capable.  We were used to “low end” students who were really struggling and he didn’t fit that pattern.

When our son turned 4, we uprooted the family to move closer to my parents in Southern Wisconsin.  My husband stayed behind for six months to keep the health insurance going a little longer, so our son, our cats, and I headed to our new home.  He enrolled in the Catholic school where my niece attended and things seemed to be okay at first, but he started reacting oddly to the move.  He would lash out at the other kids, but never the same child and never the same way twice.  He might hit or bite or try to pick up a child, and sending him to the office didn’t seem to change his behavior.  We were stumped and so was the school because it was not out of malice, but he could not control himself.  They had various people stop by from the school district to observe him and still we did not have a name for what was going on.  We started to take him to a psychologist, but it was hard to get in to see her and did not get to an “answer” there.  His teacher and I just decided the best thing to try was to give our son more time, so he moved from the afternoon class (4-year-old) to the morning class (3-year-old).  Things seemed to improve.

But they didn’t, really. He would still do odd things, like when he went to the local gardens with his class and watched the frogs jump into the pond … and followed the frogs by jumping right into the pond.  The other kids were confused; they didn’t know why he would do that, and as the oldest one in class, it was really odd.  He also ran in the parking lot on the field trip.  He knew not to do that, but he didn’t seem to understand the rule applied to all parking lots, even new ones.  We also started noticing he would get a look on his face when he seemed “overwhelmed” by something and THAT was when it would often be faster to ask the children standing near him to come away from him.  That anticipation seemed to stop the violent behaviors completely.

But he was not “developing” quite right.  He did not and still does not read social cues.  For example, when we went to the library, they had ropes up to keep you from going to the side of the “stolen book detectors,” but he would want to go under the ropes.  I would have to show him how other people were not doing that for him to understand that it was just a “rule.”  Other “rules” society has that do not actually make sense (like why we don’t pick our noses in public) escape him because there’s really no reason not to do it other than that we decided that we don’t do that.  The trouble with not knowing society’s rules means it’s harder to make friends.  Two- and three-year-olds don’t care if you pick your nose, but as a child approaches four, the kids care a whole lot.  One thing he did often was talk to boys the way girls talk.  Watch kids on a playground: the girls get very close to each other (right in each other’s faces) and boys stand back from each other.  My little guy was getting right into the boys’ faces, which prompted them to step back.

We still did not know what was happening to him.  I am a former teacher and children’s and YA lit “guru” and it’s my favorite literature to read.  One day, I was reading Sy Montgomery’s new and highly-rated biography of Temple Grandin, the woman who revolutionized how slaughterhouses are designed, to be more humane for the animal.  Grandin had Asperger’s, which was in the family of Autism.  It prompted me to look for a book on high-functioning Autism, because clearly our son was more like Grandin than Rain Man.  When I found the diagnostic criteria, I was stunned.  He did seem to fit it.  I brought the checklist to school and showed it to his teacher.  She nodded a lot, too.  She saw what I was seeing: these criteria were like a checklist of our son’s behavior.  We thought we had an answer. (Continued next Friday.)