Part 2 of the story of one father’s journey to reach an appropriate diagnosis for his son.
Ages 11-12
By the time TQ turned 11, his academic progress had ceased. My wife valiantly kept trying, she wasn’t about to throw in the towel yet. But he just wasn’t retaining anything long enough to build on. He’s a very bright kid, so learning the concepts themselves wasn’t the problem. But without adequate retention, what could he do with the knowledge? It seemed to disappear just as fast has he soaked it in.
Over the years since having been diagnosed with a mood disorder, TQ had been through at least four different mood stabilizing drugs and countless dosage changes. He’d also been prescribed pills for controlling anxiety (a daytime manifestation of the night terrors he experienced as a baby) and various additional pills to help counteract the inevitable side effects all these powerful prescriptions caused.
Despite all those efforts, however, his mood remained unpredictable. And he was acting out more than ever.
Shoplifting continued to pop up every now and then. Lying would occasionally come to light. It was during this period that I had that memorable conversation with him in the Wal-Mart parking lot after forcing him to hand over something he’d tried to steal to the store manager and seeing his complete lack of remorse.
Perhaps most disturbing, though, was the fires.
We discovered TQ’s fascination with fire after a neighbor accused him of stealing a lighter off the neighbor’s garage workbench. TQ denied it vehemently, but that night I went out to his “house”, a small shelter he’d erected in the backyard using scrap wood, and found the lighter along with an entire kit full of flammable materials and accelerants.
Confronted with my discovery, TQ admitted to the theft and to the fact that he’d been starting fires in his shelter as well as in the woods behind the house where we let him play regularly. Horrified, we called in the Fire Department for an intervention that we hoped would scare TQ straight.
During this same period, for reasons I honestly can’t even recall at this point, we made an appointment for TQ at the office of a pediatric psychologist who specialized in autism spectrum disorders (ASD). At the end of our first visit, the doctor confirmed that TQ fell well within the spectrum in a place that – a few years previous – would have likely been diagnosed as Asperger’s Syndrome.
Finally, Diagnosed Autistic at Age 12
Now, if you’ve followed along with this story for this long, you’ve no doubt noticed that my wife and I didn’t miss this diagnosis for lack of concern or lack of medical attention.
TQ regularly visited his pediatrician from birth and three different pediatric psychiatrists over the course of six years before we brought him to an autism specialist. Not one of those doctors ever mentioned autism as a possibility. Not one of them hinted at the fact that ADHD and an unspecified mood disorder (or bipolar disorder, for which he did receive a formal diagnosis eventually,) could not adequately explain away all the symptoms we were describing.
And his mother and I… well, we’d barely even heard of autism. What we knew of it involved children who were unable to speak and suffered other very noticeable handicaps as a result of the disorder.
That certainly wasn’t our son.
Except it was.
The Puzzle Finally Comes Together
Receiving TQ’s autism diagnosis was like having the veil finally lifted on the previous 12 years of our lives.
Every single issue that had been plaguing him – and us – for years suddenly became crystal clear. As we learned about ASD, we were able to go back in time and check items off the list that would have clearly identified the disorder back as far as TQ’s infancy, if we’d only known what to look for:
TQ didn’t present with any of the classic ASD symptoms in infancy that would have sent up red flags for any parent. His development through infancy and as a toddler was completely normal. However, as a very young child, he was showing numerous signs of socialization issues that we never managed to notice despite making a concerted effort to get him together with many different people in many different situations (in lieu of his being in a public school setting.)
His need for a rigid routine, his inability to handle quick changes in circumstances, and his extreme sensitivity to sensory overload explained nearly every rage and tantrum we’d ever witnessed. It explained why he couldn’t stand noises while he was trying to concentrate, why he couldn’t handle the feeling of a bunched-up sock, and why the slightest disappointment (an unexpected change from what he had determined to be “the way things are supposed to go”) caused a meltdown.
We came to realize that he does suffer from a relatively mild case of bipolar disorder, which he comes by honestly through his mother’s side of the family, but that he didn’t have ADHD at all. This allowed us to get his incredibly complex prescription situation under control. We also figured out how TQ needs to learn in order to benefit academically and retain the knowledge.
With all these positive improvements, however, came a crushing realization:
We had been parenting TQ all wrong for his entire life.
How much damage had we done, treating him like a “normal” kid while he was secretly struggling with all of the limitations and stresses caused by his disorder? What does it do to a kid to have his father tell him he’s going to end up alone and in jail, and that it’s all his fault?
As much as we didn’t want to, my wife and I had come to believe our son was a jerk. A potentially dangerous person who didn’t care about anyone or anything but himself. The word “psychopath” passed my lips more than once.
Even to this day, we haven’t fully gotten past the huge weight of guilt and regret that comes along with knowing how poorly we handled TQ’s first 12 years. Intellectually, of course, we know it’s not really our fault any more than it is his. We know that ASD is called a “spectrum” because it covers such a wide range of possible symptoms and manifestations.
If the professionals completely missed it for all that time, what could a couple of first-time parents really hope to have done?
Education is the Key
But there actually is something we could have – and should have – done that could have potentially identified TQ’s autism earlier:
Education.
My wife and I knew next to nothing about autism when TQ was born. We’re experts now, and we have a tremendous amount left to learn. But if we’d known then even a fraction of what we know now, we would have brought him to an autism specialist at three or four instead of waiting until he was 12.
And we would have been the parents he really needed rather than one more source of stress and frustration in a world that seems designed to irritate and overwhelm him.
So, if you’re pregnant, or considering having children, take the time to do some research and learn about autism. If you’re already a parent, do it even more. Don’t just assume your child is “quirky”. Monitor their progress and get with an autism specialist at the first sign of any symptom on the list.
Be the parent they need you to be.
Take it from me.
Author
Justin Lambert
Justin is a content developer for SPROUT Content. He lives with his wife, two children, and dog, Jupiter, outside Charlotte, North Carolina.
