How did I miss it?
Such is the question that has been playing over and over in my mind like a bad movie. My loving, sweet, affectionate 2-year-old boy, whom I have loved and adored as much as any mommy possibly could, has autism. And, somehow, up until recently I had completely missed it.
Everyone keeps telling me not to beat myself up, that he is still so young, that parents often don’t seek treatment until much later. I can hardly imagine that any of this would be very comforting under most circumstances, but in my case it feels simply devastating. I have been a school psychologist for the past few years. A big part of my job has been to review criteria checklists, including that for educational autism, with a team, often explaining each item to other team members and parents. I am often responsible for “educating” parents on what the criteria actually means, and on more than one occasion have had the excruciating experience of being the first person to say the word “autism” aloud in reference to their baby.
During my year “off” between college and graduate school, I worked for a daycare center in the toddler room and cared for two 2-year-old boys with autism on a daily basis. I remember constantly wondering to myself about one of the boys’ parents; they were both special education teachers, yet seemed to have no idea that their completely nonverbal son was severely delayed. How could they possibly not see it? I wondered. While the boy’s peers were stringing 2- and 3-word sentences together, sometimes more, this boy (let’s call him Jason) would wander aimlessly around the room while whining, flapping his hands, and spinning in circles. He fought off any form of physical contact from anyone, including his parents. Jason would often bump into peers, looking past them as if they were not there or were simply obstacles in his way. Yet it took a full year of my working at the center, until Jason was 3 ½ years old and still not saying a word aside from the occasional maaa (which stood for “mom,” “milk,” and various seemingly random items), before his parents agreed to invite a school psychologist to observe him and conduct an evaluation. Many tears from both parents followed as they slowly began to realize and accept what was happening with their only child. My heart broke for them, though I remained baffled that they seemed so shocked.
And now, seven years later, I find myself in nearly the exact same position. While my son, Alex, does not present as severely as Jason did, now that I know what is happening the truth seems all but glaring. I can only be thankful that I was willing to finally see what was right in front of me, rather than staying in denial and missing out on getting help.
For any parents out there who may be starting to ask the same questions about their own children, I thought I’d compile a list of some of the things that didn’t stand out to us about Alex until just recently, or that we brushed off as “just a phase.” Plenty of the things on this list would NOT be indicative of Autism Spectrum Disorder on their own, but when put together become some pretty big red flags.
- More than anything, good eye contact was the thing that I completely missed. Being an educator, I knew that looking for eye contact along with social smiles were the first things doctors typically check for when screening for ASD. So when Alex began making eye contact with us and smiling almost right away, I immediately checked “autism” off of that list that parents make up in their heads of everything that could possibly go wrong with their children, and didn’t give it another thought for the next two years. HOWEVER, when I finally began to reconsider the possibility when Alex was 2 ½ , I began scanning through old photos and videos and comparing them with some videos I found on YouTube comparing development of typical kids versus those with autism (this was a really helpful one: https://www.youtube.com/watch?v=YtvP5A5OHpU ) I soon realized that, while Alex was looking into our eyes, he was just as interested by all of the other things going on around him and didn’t lock eyes with us frequently the way his baby sister now does. Also, Alex would smile at us, but he would smile almost as frequently at objects and movement as he did at people. Around the time that he turned 2 years old (i.e. a few months prior to his baby sister’s birth date), I noticed Alex’s eye contact becoming more and more rare. Today he still makes eye contact but only on his own terms: if we try to look at him when he is looking away, he will do everything in his power to not make eye contact (twisting his head away or even rolling his eyes up or to the side). Eye contact is most frequent when we are snuggling or doing anything else physical (e.g., dancing or playing chase games).
- This was another big one: not looking at us when his name was/is called. I remember Alex’s pediatrician asking me if he was doing this at around 8 or 9 mos., and I said no but that my husband and I were really bad about using his actual name, instead alternating between pumpkin, peanut, and nugget (clearly I was very hungry when Alex was a baby). The doctor didn’t seem worried, so I wasn’t worried either. Fast-forward to now, when Alex still doesn’t look at us 90% of the time when we say Alex: we considered hearing problems and attention issues, but it took almost 2.5 years before I considered the possibility of ASD.
- Lack of following directions. When Alex was 14-15 mos. old, he would follow a few 1-step directions (go see dada; throw ball); he quickly stopped doing this though and we thought for sure it had to be due to stubbornness(which would not be a surprise given family history). A clue that something else might be going on was that Alex would not follow directions even when they were something that he would clearly want to be doing.
- Crappy sleep. This one can obviously occur in plenty of kids without autism, and would never be used as a way of diagnosing on its own. I have always had such bad periods of insomnia that Alex’s habits of waking up in the middle of the night and frequently getting up for the day at 2 or 3 am didn’t strike me as anything that far out of the ordinary.
- Though he could only say maybe 10 words at the time, one day Alex just started spouting out the letters of the alphabet while pointing to them on my laptop (he was 22 mos. old). He had apparently learned them from watching Super Why without us even trying to teach him. Kids with good visual memories are often able to do this, but being so fluent with letters while struggling with functional speech turned out to be another red flag.
- Playing with toys or household objects in “odd” or unimaginative ways; for example, Alex likes spinning wheels on cars or rolling them back and forth over and over again in front of his eyes (making quick, repetitive movements in front of his eyes is another one). I had noticed a little bit of hand-flapping–one of the more commonly recognized symptoms of ASD– but since it wasn’t nearly to the extent that I had seen in other autistic children, I just chalked it up to a way of showing excitement.
- At 2.5 years, Alex had developed a vocabulary of at least 200 words (I actually wrote down every word I could think of and counted); three months later I would guess that this number has doubled. However, Alex very rarely used these words to communicate in a functional way. Alex rarely answers questions, even when he knows the answer (e.g., when asking what’s that? about something in a book that he’s labeled on his own many times).
- Our at-home daycare provider once mentioned to my husband that Alex had more difficulty transitioning between activities more than the other children she watched; we didn’t notice this for a long time because a) we kept a pretty consistent routine at home anyway, and b) we didn’t have any other children to compare Alex to (clearly this changed when Baby Clara was born…talk about your changes in routine).
- Alex loves lining up toys. We thought this was adorable, albeit a little odd, and it didn’t stand out to us at all until the service coordinator started asking questions during our evaluation.
I’m hoping that my posts will take a more optimistic turn soon, but thought this one was especially important. If I can offer any advice at all to other parents, it would be to make your doctor hear you when you have a concern, even if it seems like a mild one. And if you get an opinion from one professional and that opinion isn’t sitting right with you, get a second opinion. With early intervention being as crucial as it is, I wish I had done these things sooner, but I am also SO thankful that I bit the bullet when I did.