How did you know?
It’s funny, but this is the question we are most often asked when we tell people Blue Boy is autistic. Maybe it is because he often appears so “typical” or perhaps they have concerns about their own child. But, in all likelihood, it’s just a safe question to ask.
So, how did we know? This may sound callous, but our suspicions and concerns developed because we had a control or point of reference…Beany! Blue Boy was a couple of weeks ahead of Beany in all of the early milestones – head control, rolling over, sitting up, crawling, standing. When Beany started pointing at everything and trying to name objects we expected Blue Boy wouldn’t be too far behind. After a few weeks and still no pointing, I started telling myself this was probably one of those boy/girl things, right? Then we started to notice that Beany would turn towards us, or at least react, when we called her name but Blue Boy rarely did. Well, he was just really focused, right? We also considered that there might be a problem with his hearing – after all, he had taken a very long time to pass his newborn hearing test. We started to “sneak” up on him from behind and say his name or talk to him to see if he would react to us. Our results were inconsistent, our methods anything but scientific. Our pediatrician was not worried, but we couldn’t shake the feeling that something was not “right”.
At about 15 months, we took Blue Boy in for a hearing test. He failed. Not because of his hearing, but because the testing environment caused him so much distress that he could not be tested. We were told to come back in 3 months and try again. My emotions over that next 3 months were wide-ranging. On many days I chided myself for being such a worry-wart because he was clearly a happy, charming little boy who loved to engage people. But there were plenty of days when I couldn’t stop ruminating on the pointing thing; I was convinced that this was important. I also worried about eye contact. At a distance everything seemed fine, but up close Blue Boy would avoid looking into people’s eyes. And the mouth….why was there always something in his mouth. Not the usual toddler chewing and exploring but an almost constant need to have something in his mouth. He also held small objects in his closed hand and carried them around for hours. They were frequently blue, but not always. Blue. My sweet, sweet Blue Boy. He always chooses blue. At 9 months he sat in a baby bathtub filled with balls and one by one threw out the blue ones, only the blue ones. We gathered them up, brought them back and he did it again. At the time I thought it was strange, but I recall thinking at least we knew he wasn’t color-blind. I tried to adopt “You worry too much, he’s fine” as my mantra, but I had a growing feeling in my gut that Blue Boy was autistic.
So, I took to the internet. The site I found most helpful contained a library of video clips that showed “typical” and “red flag” actions/behaviors in various settings. I looked at every age-appropriate example clip — some left me feeling like I’d been kicked in the stomach. I was on my own in this pursuit, I hadn’t shared my autism concerns with Blue Boy’s Mommy. Mommy was operating on the assumption that Blue Boy had ADD, she is the birth mom and it runs in the family. I would watch clips at work and then go home and try to recreate the situation to see how Blue Boy reacted. Sometimes I was relieved and at other times I felt devastated. I found myself hoping it was ADD – we had some experience with that, we would know how to help him.
At 18 months Blue Boy passed his hearing test – he was still quite distressed in the tiny room with flashing lights, sudden noises and a stranger trying to engage his focus as he clung to me – but he passed with a normal field of hearing (he refused to wear the headphones). Time to move down the checklist – we discussed autism and ADD and were told a referral to the autism center was the best way to go. We were told the wait list was around 6 months and that they would call us when we were getting close to the top.
As we approached 2nd birthdays for Blue Boy and Beany I was nervous that I hadn’t heard from the clinic so I called. There was nothing in their files…Blue Boy had not been referred. It took every ounce of emotional strength I had not to explode through the phone in a stream of expletives and strangle the person on the other end. Long, winding story short, the chart was misread and the referral was made for ADD, not to the autism center – different departments, different waiting lists. To their credit, and after many phone calls and hoop-jumping on my part, the clinic backdated Blue Boy’s referral and we were looking at another 3 month wait instead of six.
During the wait, Blue Boy’s struggles and challenges became more and more apparent although we missed much of it in the moment. Spoken language exploded for both Beany and Blue Boy during this time. We noticed a few quirks – he often dropped hard consonants at the beginning of words, most of his words were multi-syllabic and rather sophisticated for “first words”, and he loved to sing songs over and over again. His language began to feel like a fire hose – he never stopped talking or singing or repeating phrases he’d heard. He had a lot of “language” but I never felt as though I knew what was in his head. Beany managed to get her point across and I could understand her in a toddler sort of way, but Blue Boy seemed to be inside his own head and I didn’t feel like I knew him. Just before his second birthday, we got a call from the autism center. There had been a cancellation, did we want it? Uh, YES!
The assessment process was very difficult for Blue Boy. From the report, “[Blue Boy] was quite anxious throughout the evaluation, and evaluation tasks could nearly not be administered to him in a standard manner….Overall, although concern is raised about [Blue Boy]’s level of anxiety, it was felt that this occurred due to difficulty with flexibility in social interaction skills. Therefore, the findings…were considered consistent with a diagnosis on the autism spectrum…” There is was in black and white…autism. So, now we know.
His actual diagnosis is PDD-NOS, Pervasive Developmental Disorder – Not Otherwise Specified. It doesn’t really mean much since the doctor told us they are pretty good at identifying when a kid is on the autism spectrum, but exactly where on the spectrum is more difficult to pinpoint. We were told we would have a much clearer picture of Blue Boy and his challenges when he reaches kindergarten age. In the meantime, we feel as though we are navigating foreign waters and struggling to get our bearings. There is a lot of information and many, many therapies out there; from excellent to harmful rubbish and everything in between. We are still sorting it all out, but I have adopted a new mantra, a new filter….”do no harm” because Blue Boy rocks.