Waiting for an Autism Diagnosis
Tommy was having trouble growing up.
He wasn’t talking at age 2. We waited it out for a bit, but, at 3, when he was still barely communicating, we sought out professional speech therapy. We found a great therapist at our local children’s hospital. With help, Tommy began to communicate more. The therapist worked on his vocabulary and eventually on one-step commands.
So he was learning to follow directions, but his conversation skills were practically nonexistent, and he seemed a bit antisocial. Consequently, when he turned 4, we took him to a doctor to see what was wrong. We suspected autism.
Tommy was observed and tested, but no autism diagnosis was made; in fact, no diagnosis at all was made. We were confused. In my heart and mind, I just decided that I had a “difficult” kid. We enrolled Tommy in a public, special-needs preschool.
As Tommy grew, he developed pronounced fears of many things. At ages 5 and 6, he was terribly afraid of (among other things) toys that made noise, any new situation such as going to a new restaurant, and public bathroom hand dryers. (Every time I took him into a public bathroom, I prayed for paper towels.)
When he was 6, we took Tommy to another doctor, the autism guru in our Midwestern town. It was this doctor’s opinion that our son didn’t have autism; he had anxiety disorder. We were told that the two maladies “looked a lot alike,” which meant that they shared many of the same symptoms.
So no autism diagnosis. But the teachers and practically everyone who knew Tommy and knew something about autism said, “Tommy is autistic.”
We suffered through ages 6 to 9. When Tommy turned 9, we decided we needed to get a third opinion. We took our boy to a famous autism expert in the big city near our town. This guy spent about an hour observing him and talking to him, and at the end of the session, said, “He doesn’t feel autistic.” That was his word — “feel.”
Diagnosis of autism is not an exact science. We had no other choice but to continue to plug along.
When Tommy was 10, we decided to get him into a social group because he still desperately needed to work on communication and conversation skills. We took him to a local university psychology department that was hosting social groups primarily for autistic kids. We were told that although Tommy did not have the autism diagnosis, he could still theoretically join the group. But before they would officially let him in, they had to “audition” him — to interview and test him. Long story short, he did not pass their tests. We were told he was not “group ready.” We couldn’t even get our kid into a social group because he wasn’t “social” enough. Talk about a catch-22. They told us to get Tommy weekly therapy (to try to “iron out his quirks” is how I explained it to myself.)
So the summer of 2015, when Tommy was 10, we took him to yet another doctor, another expert. But, miraculously, very early into Tommy’s treatment, this guy, a psychologist, said, “Your child has autism. I’m convinced of it.” This doctor would later tell us that his initial hunch that Tommy had this malady was because of Tommy’s constant “scripting” behavior. Tommy loved to recite scripts from movies and television shows, a common feature of autistic children.
Finally, finally, a doctor who believed that Tommy was autistic. I had mixed emotions. It was nice to have a probable explanation for why my son was the way he was. But it was also painful that Tommy did indeed have (the dreaded) autism diagnosis.
Doctor no. 4 did actual autism tests on Tommy. The first one was composed of special games, which Tommy had to play with the doctor; and of formulated questions, which Tommy had to answer. The second test (which wasn’t really a test per se, but a diagnostic instrument) was a set of intensive questionnaires which both Tommy’s teachers and we, his parents, had to answer. And I have to say, Tommy “passed” the tests with flying colors. He did, indeed, have autism.
So then, what happened?
Things got a little easier. Finally, with a diagnosis, the school (and everyone we knew) became more understanding of our kid. Tommy still had the anxiety disorder diagnosis, but now, the powers that be could better wrap their minds around Tommy’s condition.
The autism label is more helpful in the society in which we’re living. The label brings with it (among other things) extra assistance at school; funds for medical services, therapies and medication; and a little more compassion for your child.
So parents, if you’re in a situation similar to ours, do not give up in your quest to find out what’s distressing your child. Eventually, you will find the answer. Whatever it may be.
Yeager, L. (2018). Waiting for an Autism Diagnosis. Psych Central. Retrieved on February 27, 2020, from https://psychcentral.com/blog/waiting-for-an-autism-diagnosis/