When my chubby, reason-for-living-and-breathing son blew past all of his developmental milestones without hitting them, I believed my mom-friends and the pediatrician, who said “Kids develop differently. It’s nothing to be worried about.” He did eventually reach each one, but generally months behind schedule and after hours and hours of focused attention from both me and his father.
I found it cute that his favorite play place as a toddler was underneath the kitchen sink with both cabinet doors closed. I would open the cabinets and find him with toys in hand. He’d look up and smile at me and then close the cabinets again. I was a young Mom, just twenty-one years old, and totally unfamiliar with autism spectrum disorder behaviors.
Hayden was my only child for many years, so I had nothing to compare his behaviors to. They didn’t concern me, so I didn’t bring them up with others. It hadn’t yet occurred to me that I might have a child with an autism spectrum disorder. It wasn’t even in my vocabulary.
It breaks my heart to tell you that because I thought his behaviors were normal, I also thought that they were controllable. In an effort to be a good mother, I often disciplined him.
Hayden was usually a joy to be around. He was sweet, kind, funny, and a good listener. For this reason, I was perplexed and disappointed at his behavior each time we went to a store of any kind. Without fail, he always ran away from me at stores. No matter how many times we talked about what good behavior was and what my expectations were, regardless of the number of times we discussed what the consequences and rewards would be, without fail the trip would end with me frantically searching for him. If it was a clothing store, I knew where he would be: in the center of the store, inside a rounder of clothing.
Yes, I repeatedly disciplined this behavior. No, it did not occur to me that these were signs of autism spectrum disorder. Like many parents, I simply had no frame of reference.
As he grew older, we noticed other things. Why did my well-behaved, well-mannered child refuse to look my adult friends in the eye and greet them? Why did this reduce him to tears and tantrums time and time again? Why did our child who normally delighted in approval sit at the table for hours refusing to eat certain foods because, “the feel of it” made him “gag?”
By the time that Hayden started school, I knew that something was wrong. I couldn’t place, it but my Mom senses were on to something. I knew that it was taking him too long to master the words on his spelling list each week. We were working so hard and making so little progress and… heartbreakingly, Hayden seemed to know it too.
By first grade, I started talking to teachers about it. I asked about what testing could be done. What were they noticing at school? Yes, they had noticed that he was sensitive. They also noticed that he was a hard worker and an all-around great kid. That part was impossible not to notice.
At this point, I knew in my gut that something wasn’t right, that he needed help. I was afraid that if he didn’t get it, he would get so frustrated that he might stop trying.
Recognizing the Signs of an Autism Spectrum Disorder
This was also the year that I started teaching. I had an inclusion classroom, which included much training on Autism Spectrum Disorders. There wasn’t a single moment when it hit me that Hayden was autistic. It was more like a slow, painful, dawning realization. It was painful because I felt so damn guilty.
I felt guilty for all the times I had disciplined him for things that were a part of who he was. Guilty for not providing him with the help, support, and resources that he needed. I wasn’t sure I would ever forgive myself. I was his Mom! Shouldn’t I have somehow known this? Did I even deserve to still be his Mom?
The good thing about finally understanding what was going on is that it now fueled my passion for finally getting him the help he deserved.
We got nowhere in first or second grade. They’d only done basic intelligence testing, found him to be mid-range, and sent us on our way. Each year, he struggled, to state it mildly, with state testing. He came home each day with anxiety-induced stomach aches because he knew he wasn’t meeting the benchmarks. By this time, I was a single mom and paying for an autism spectrum disorder evaluation on my own wasn’t a possibility. I needed the school to see him drowning and help us.
In third grade, the teacher noted that Hayden needed occupational therapy. Despite all of our efforts, he still couldn’t tie his own shoes or grasp a pencil without grinding it into the paper. She’d picked up on his processing delay as well. Finally, it seemed I had an ally! But the school year ran out before we got any substantial work done, and it seemed we’d have to face another year of school-related anxiety.
Getting Hayden the Help He Deserved
With fifth grade, came an onslaught of change in Hayden’s personal life so intense that I knew he wouldn’t make it without the support of a professional. I didn’t realize this would be a defining moment in all of our lives. The psychiatrist Hayden was seeing picked up on a shoulder tick that Hayden had his whole life but I’d never consciously noticed. He asked me about his fixation on certain topics and suddenly those conversations about which player should be MVP, dating all the way back to kindergarten had more relevance!
And then he said it. He said the words. Hayden was on the autism scale.
He referred us out for psychoeducational testing, all of which would be covered by a standard insurance copay. Hayden was finally going to get the school accommodations he needed since kindergarten.
When we got the report saying that Hayden was indeed on the autism scale, that he suffered from a processing disorder, had an anxiety disorder, and was borderline ADHD, it was such a mix of joy and sorrow. I was grateful that he would finally have the resources he needed and was also deeply afraid of labeling him. I was concerned that when I sat down and told him all of this, he’d hear me saying there was something wrong with him.
But God works in mysterious ways.
A few days after I opened my mailbox and found the aforementioned report, Hayden and his step-sister were playing “school” with their stuff animals. They were giving each of their stuffed animals in the classroom different roles and identities. One of their students was identified as autistic. I didn’t even know that Hayden had any understanding of that word or what it meant, much less that it was so normal to him.
That afternoon, when stuffed-animal school was out of session, we sat together on the couch and I explained to him what all those tests had been about. His eyes lit up and he asked me, “So that’s why I like to hide sometimes, and why I don’t like the texture of meat?” I cried tears of relief.
Instead of hearing me say that something was wrong with him, he heard me say, “Everything about you is for a reason.” And he was set free that day.
He found no shame in help or accommodations, only relief. Now we know how to make a picture checklist of everything that needs to be done before bedtime and to let him wash down certain textures with a drink. We know why right and wrong are so concrete for him and how important it is to work with that. We know that art is a calming outlet of expression for him.
If, like me, you missed the signs of an autism spectrum disorder in your child, know that you are not alone. There is grace and hope for you. That day that Hayden and I sat on the couch and talked about what those words meant to him, I told him how sorry I was that I hadn’t seen it sooner. In his own, preteen way, he told me that all my fighting on his behalf hadn’t been lost on him, and he thanked me for always being in his corner.
As parents, we judge ourselves so harshly. We’re usually doing a better job than we think we are! Let’s agree to keep loving our kids and fighting for them, just as they are! I think that’s all they’d ask for.