“They say he has autism.”
I didn’t go with my wife to the appointment with the developmental pediatrician that day. I had taken a couple sick days not too long before then, and I didn’t think it would be prudent to take another day off. I remember telling her I wasn’t worried about what she was going to tell us. “He’s just a little behind”, I had said, confident in the outcome of the appointment. “I was behind. I had to go to therapy and all that. Look, he’s only two. We’ve got plenty of time for him to catch up.” With that, I gave her a kiss and snuck out as quietly as I could so as not to wake my boy.
Four hours later, she called me at work to give me the news. I could tell how hard she was fighting to hold the tears back. She had been terrified that day. At two years old, our boy wasn’t walking, spoke less than ten words (most of which were incredibly difficult to make out), and seemed to spend most of his time in his own little world. He was also prone to meltdowns at the weirdest times, set off for reasons neither she nor I could determine. One of the workers at the daycare had actually asked her if he had been diagnosed autistic. My wife had gotten upset by that, which in hindsight was because she had figured out what I hadn’t. No, I just waved it off as a mother being overly concerned and sent her off to receive the most life-changing news our family would ever receive by herself.
I’ll never forgive myself for that.
I stared at the receiver in shock. I’d been so sure. “Wait,” I stammered out, firmly entrenched in the first stage of grief (disbelief). “He uses words. He looks me in the eye! He loves to be loved on! That’ s not what autistic kids do!”
“Honey, the doctor’s positive. He fit all the criteria. He’ got it.” She finally lost the fight, sobbing into the phone. That’s when I learned the first and most important fact about autism:
If you’ve ever met a kid with autism, you’ve only ever met one kid with autism.
The next few weeks were spent trying to come to terms with what we learned. There’s a very steep learning curve when your child receives an autism diagnosis. You find yourself scurrying to put as much information and help together as possible. You find yourself splitting your time between trying to educate yourself and looking for any snippet of information that will convince you that your child’s still going to be able to lead some kind of normal life. You even find yourself pouring through those articles about B vitamin deficiencies, gut bacteria, and fevers that “break the autism” when your kid is sick. Basically, simple issues with simple solutions that will take care of the far more complex problem.
Thankfully, one of my oldest and best friends had already been through a lot of this. His former girlfriend had a young son with autism, and he was still a huge part of the boy’s life. He played a huge part in helping us those first few months, and I’ll always love him for that. Experienced support is crucial in those early days, and I can’t stress enough the importance of seeking it out, whether it be family, friends, or a local support group. Thanks to him, I was able to sift through all the bull pretty quickly and focus on what would actually be helpful.
And so our research began. One of the resources we came across was a website for an organization called “Autism Speaks” (autismspeaks.org). On the website, they actually have a glossary on the site, full of common terms associated with being diagnosed. Some of the ones we’ve encountered and used the most include:
– Autism Spectrum Disorders – an umbrella term for a wide spectrum of neurobiological disorders that affect a child’s ability to interact, communicate, relate, play, imagine, and learn. These disorders not only affect how the brain develops and works, but may also be related to immunological, gastrointestinal, and metabolic problems. Signs and symptoms are seen in early childhood.
– Echolalia– the repetition of words, phrases, intonation, or sounds of the speech of others. Children with ASD often display echolalia in the process of learning to talk. Immediate echolalia is the exact repetition of someone else’s speech, immediately or soon after the child hears it.
– Hyperresponsiveness– abnormal sensitivity or over reactivity to sensory input. This is the state of feeling overwhelmed by what most people would consider common or ordinary stimuli of sound, sight, taste, touch, or smell.
–Repetitive Behaviors and Restricted Interests– common in children with ASD. Children with ASD may appear to have odd or unusual behaviors such as a very strong interest in a particular kind of object (e.g., lint, people’s hair) or parts of objects, or certain activities.
Etc., etc, etc. The glossary goes on and on. For other common terms as well as an extensive list of articles, tool kits, first hand experiences, and lists of resources in your area, I’ll refer you to the site.
After almost three years, I still feel as if we’ve barely scratched the surface. As he gets older, we’re always encountering new terms and challenges. Still in the mad rush of it all, I noticed something; despite the difficulty he had in putting them together, our boy made use of some common terms of his own:
-“Hello, there!!”- His standard greeting, an indication of his excitement to be seeing you
-“Hugs?”- Self-explanatory. This child is the huggingest kid you’ll ever meet.
-“Tickles?”- Not so much a question as a demand for the immediate provision of sensory input via rigorous bear-hugs and tickling to the extremities, particularly the back and sides of the torso or “belly”.
-“Moke!”- A request for sustenance, usually of the dairy persuasion, but also including poultry distributed in nugget form.
-“WOO-HOO!”- It’s on.
For us, it meant that while we were scrambling to find the right therapies and tools to help him, he was going on with his happy little life and finding his own ways to let us know what he needed.
Even though he’s made (and continues to make) great strides in communicating since then, those early attempts at communication served as signs for another term, one more important than all the others to be found on-line or in any medical journals:
– Hope – an optimistic attitude of mind that is based on an expectation of positive outcomes related to events and circumstances in one’s life or the world at large. As a verb, its definitions include: “expect with confidence” and “to cherish a desire with anticipation”.
That particular term, along with it’s frequent companion, “love”, are what’s kept us going, and what helped us to recognize that the only true indicator of success is our boy’s happiness, and how he feels about himself. It’s not about what we want for him. It’s about what he wants for himself, and what brings him happiness. It’s about living on his own terms.
In the end, those are the only terms that matter.