Each year, April’s Autism Awareness Month raises awareness, in a matter of speaking, but also brings polarizing debate about whether “awareness” is enough. People all over offer their own definitions for this well-meaning and sometimes off-putting term, so it makes for some unexpected clashes. The term that gets more acceptance is, predictably, Autism Acceptance.
Again, the definition for that can be a bit tricky. Most people unaffected by autism at any level in their lives will shrug it off as a game of semantics. For those in families like mine, the terms have very real definitions. In fact, there’s even one more. This is my story. The details may differ from others, but the main ideas are universal.
What Is Autism Awareness To Me?
Lucas was tiny when I first started to think there was something to be concerned about. Concern, as I’m using it here, is meant in the sense that I had noticed things that could be cause for a discussion with a professional. Not good. Not bad. Just noticing.
His mushy little body was like a bean-bag baby. His mouth hung open and he just couldn’t seem to balance. For his first birthday, I had to hoist him up on pillows for a picture to keep him from toppling over. I knew at that moment, from the memories of raising his sister three years earlier, that this wasn’t the way they spell out milestones in all those thick paperback books.
Doctors said he was “low tone” and suggested physical therapy. Everyone seemed cool with that, but I still sensed there was more going on. He didn’t play the same way his sister had. There was no pretending or stacking of blocks. He just lounged in his bouncing chair and giggled as I made faces at him all day.
That giggle was one of the things that prevented me from really seeing what I knew was there. Laughter, hugs, and happiness were all things that Hollywood taught me meant “not autism”. I was so ignorant of the idea that autism could look any different than Dustin Hoffman that I couldn’t even see it in front of my own face.
Until the day I said it out loud.
We were at California Pizza Kitchen for a large family dinner. I watched as my son, in his high chair, began rocking back and forth. His chest would hit the table with each rock and, for some reason, everyone thought this was “cute”. After months of holding my fears in for worry that they would come true, I finally spoke out. It made for an awkward dinner.
At least now, I was aware. To me, Autism Awareness means that you understand that autism isn’t the same for every person with it and that, as a parent, you can spot it when it is present in your child. That’s step one.
What Is Autism Acceptance To Me?
My son may have had autism, but I wasn’t happy about it. Writing those words can feel gut-wrenching to the father of a non-verbal 12-year-old because they suggest that I was somehow let down by this place in our lives. It implies that I don’t value my boy or love who he is. It’s hard to look back on past feelings and articulate them when they stand in such stark contrast to the feelings you have today. However, it’s important to look at why those feelings were there and how they changed.
I was afraid of the unknown. I was not happy about the uncertainty of our future and the imagined challenges that were about to befall my boy. At the time, I loved Lucas so much and my lack of immediate acceptance wasn’t done out of embarrassment for myself. It was done out of worry for him. How would he navigate the world? What does this even mean? How can I raise a child with autism?
Maybe he was just deaf. No one thought of that one, but I did. For a few weeks, I would come up behind him and whisper “Lucas”. When he wouldn’t turn around, I would cheer in my head. When he would turn around, I would tell myself “two of three tries” and go again with a quieter voice.
Eventually, I put him in the car and drove him to the hospital for a hearing test. Even though he wasn’t speaking, they assured me they could monitor his responses and know for sure. So they did.
He wasn’t deaf.
When the doctor returned to tell me, it was like a scene from a movie. She opened her mouth and said…
OK, Mr. Guttman, he doesn’t have any hearing problems. This could mean…
And then her voice echoed and a loud droning siren played out over her. That was it. I had made my last play. My son had autism.
I accepted it.
To me, that’s what Autism Acceptance meant. Strangely enough, given that story, it actually can seem as dismissive as “awareness” when playing the word game. Accepting something doesn’t mean you like it. In fact, it kind of implies you don’t. Accepting something is great, but it means that you made a conscious effort to do so.
What Is Autism Appreciation To Me?
For me, Autism Appreciation was when I finally “got it”. It wasn’t until later on and, when it happened, it changed everything.
When you have a non-verbal toddler and preschooler, it feels like everyone is luckier than you. They get to have stories about funny things their child said and did. They play pee-wee soccer and do Cub Scouts. It can make you focus almost exclusively on what your kid can’t do.
Sending him to school is the same story. Checklists of his deficiencies and conversations about “areas that need improvement” always hit the hardest, even when the administrators throw in how “adorable” he is. It hurts to feel like you’re talking smack about your kid. Yet, for a special needs parent, it’s necessary to get them support.
As all the other talking kids from preschool started to grow up, I could see additional personality traits emerge. Some were funny. Some were nice. Some were not. My son was no longer the only one who was unique. Everyone was. I looked at him as a person, not a person with autism.
It was then that I started to focus on the things that autism brought to my boy’s personality. He was more loving than anyone else I have ever known. When I am at my lowest, Lucas will come by and give me a kiss. He doesn’t do it because he senses I am sad or because he wants to garner favor. He kisses me because, at that moment, he wants to. Another 12-year-old might not do that, but Lucas does. I credit it to autism.
He’s genuine. Without words, it would seem like understanding his feelings would be hard. Yet, it’s not too hard. He wears his emotions on his soggy little sleeve. I know when he’s happy because he smiles. I know when he’s sad because he frowns. To put it bluntly, Lucas isn’t full of B.S. He doesn’t play headgames or hide his feelings. That’s because of autism.
Are there things that autism and special needs bring to his life that make it harder? Sure. But there are so many things that make his soul beautiful to the world. The first time I sat down and really took notice of that, it changed how I saw him, how I saw myself, and how I saw autism. That’s Autism Appreciation.
This April, make people aware of what autism is. Teach them to accept that it’s all around them. Then show them why the person in your life with autism should be appreciated because of, not despite, their place on the autism spectrum.
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