How Did You Know?

April is Autism Awareness Month and it occurs to me that I’ve never written about how Ben came to be diagnosed with autism. People often ask, “How did you know?” The answer isn’t simple. It was dozens of small things and it took time to add them all up. It will also take time to tell this tale, so I’ll divide it into two entries and hopefully I won’t lose you along the way!


Ben was a fussy baby. He cried a lot, was difficult to console and often seemed uncomfortable. In the beginning, we called it colic. Later we blamed it on teething. And beyond that, there were other things. He just didn’t behave like his peers.

He would hyper-focus on anything that spun – toys, ceiling fans, the wheels on a stroller, you name it. He spent countless hours with a toy he received when he was 10-months old. It had multi-colored, removable gears that spun for ten seconds or so when you pushed a button. He would remove and rearrange those gears incessantly, pushing the button each time to observe his work in action, all the while never bothering to show it to anyone.

He would tantrum whenever asked to leave a preferred activity. He was very sensitive to sound and touch. High-pitched, mechanical sounds seemed physically painful to him and light touch repelled him. He couldn’t stand to be dirty in any way and refused to put his bare feet on grass or sand. He used language in odd ways – often repeating verbatim phrases from favorite videos. And the “arrangements” – good lord, the arrangements.

He would endlessly line up items that were the same – coasters, picture frames, blocks – a case of water from Costco was his dream-come-true. And he arranged items that were different. The spice drawer was a particular favorite and he would make complicated arrangements with the various spices in the doorway of the kitchen for hours. We got used to stepping over these arrangements, but the dogs often knocked them over to disastrous results. Ben also had dozens of sets of letters and numbers. They could never be mixed together and when he was ready to line them up in order, you’d better hope they were all there. We had all sorts of household rules about how the letters and numbers should be put away and about disturbing “line-ups” and “arrangements” to avoid upsetting Ben.

I was at a loss. I had never spent time around babies before and with Ben being my first-born, it was difficult for me to know what was “normal”. The people closest to me and those whom I trusted the most, although well-intentioned, dismissed my concerns for the most part. If I mentioned a particular behavior, the response was usually, “Oh, he’s fine - I’ve known other kids who did that.” When I expressed concern over his tantrums, I was told that Ben needed discipline. My pediatrician thought Ben was just a “really organized little guy” and repeatedly suggested we “wait and see.” Once I saw him write on Ben’s chart, “Mom depressed?”

In the 1950s, the prevailing theory on the cause of autism was called the Refrigerator Mother Theory (it’s a real thing, I swear – you can look it up). This theory surmised that emotionally frigid, withdrawn mothers were causing their children’s behavior. We have since learned that it’s quite the opposite – the stress of dealing with these kids with absolutely no guidance or support was causing the mothers’ flat affect and depressed demeanor. These moms were at a loss – they had no help and no answers for their children’s behavior – they were quite simply beat-down emotionally. I understand how they felt. I always wanted children, but before I was in my thirties, I knew I wasn’t ready to be the great mother I aspired to be. When I finally decided I was ready to be a mom, I was sure I'd be good at it. It was terribly disappointing to feel like I was failing so miserably. I was devastated.

It was at Ben’s two-year check-up when someone finally paid attention to my concerns. It started with a conversation about tantrums.

I asked Ben’s doctor how long I was supposed to ignore a tantrum to make it stop. All the parenting books advise ignoring a tantrum and I had faithfully tried this with absolutely no success. Ben’s doctor gave me a funny look and said, “What do you mean, ‘how long?’” I’m sure I looked equally confused when I said, “What do you mean, ‘what do I mean?’” I explained that I was trying to follow the advice of every parenting book on the planet, but it wasn’t working. Forty-five minutes was as long as I’d lasted – I’m not sure how long Ben could go. The pediatrician’s brow was furrowed at this point, but when I told him I left the room and the tantrums still didn’t stop, he looked at me like I was an alien. “How many times a day does this happen?” he asked me. I told him that on an average day it might happen ten times. I finally had someone’s attention.

Based on this discussion and the countless other “little things” I had mentioned over the past year, Ben’s doctor suggested we have him evaluated for autism. I put Ben on the waiting list at Children’s Hospital and at the University of Washington’s Autism Center. It took about five months to get an appointment at the UW Autism Center.

To be continued...