Is he autistic enough? Such a weird question. Yet, it is one I find myself worrying about and struggling with. I worry every time we go to our behavioral pediatrician appointments that our doctor will decide Joshua isn’t autistic enough to continue to receive treatment. I worry when we sit in teacher conferences at school and I get that skeptical look from teachers when we explain his diagnosis. I wonder with every look of surprise if they will decide he’s not worthy of continued intervention and help.
It’s frustrating when other parents with kids on the spectrum give us the look because our child doesn’t seem to be as much on the spectrum as their child does. I know they wonder how we could possibly relate to one another. I get this weird mixed feeling of pride and frustration when someone says, “I would never have known! He seems so normal!” It proves in my mind that for many people, perception is reality even if it isn’t always the truth. It scares me a little.
Joshua was diagnosed with Asperger’s syndrome and sensory integration disorder at the age of four. Today his diagnosis is combined under the umbrella of autism spectrum disorder. His autism, even as a 4-year-old, never presented in what some might consider stereotypical ways. He does not self-stimulate himself by flapping his hands or rocking. He, like so many kids on the spectrum, is highly intelligent. He is engaging to talk to.
He can almost blend in perfectly with his peers. Almost.
What everyone does not see is the amount of advocating, therapy, and learning hacks used over time to help him cope with life. When he was little, we learned to carry earplugs and headphones for music when we went to busy and loud places. We still keep a dry-erase calendar on the wall and are careful to inform Joshua very clearly of our schedule. That way he knows what to expect and we work hard to not deviate from the schedule. When he was younger, we would show up at school to give him hugs because we learned giving him squeezes and pressure on his joints grounded him and helped him get through the day better.
As a teenager, he misses social cues. Although he seems to understand the concept of empathy for others, he doesn’t always respond appropriately or is comfortable with it. We still remind him to make eye contact with others when he can. He has what some call hyper-focus. This is when he focuses very specifically on certain things and knows everything there is to know about them. For instance, Joshua plays nine different instruments to include the harmonica. He plays it with a neckpiece, Billy Joel style while sitting at the piano. He can passionately talk about the difference between “canon” and “legend” and how it affects the storylines of the Star Wars saga. He can tell you the per piece price of LEGOs and the stores that are overcharging their customers. He can tell you more than you ever thought you wanted to know about World War II.
Joshua is the perfect example of autism spectrum disorder hiding in plain sight.
At first glance, he can pass as any other kid. But if you watch him, talk to him, and get to know him, you start to see the little “quirks” and interesting speech patterns. I’m so proud of how far he has come. When he was little, we weren’t very sure what his life was going to look like. We are excited that he is able to do all the things he wants to do and then some. But getting to this point took time, a lot of energy, and advocating for him.
I know I shouldn’t worry. We just need to walk confidently in our truth. Autistic enough for certain people or not, Joshua is exactly who he is meant to be. He is a great kid who is going to do amazing things. He is quite possibly going to change the world.