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Autism: How My Son Is Changing the Conversation

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My son, Noah, was diagnosed with autism last summer. Autism isn’t as scary as it may sound. Unfortunately, it is one of the most commonly misunderstood diagnoses and I want to shed some light on the lesser-known sides of autism — and on all the beauty it has brought into our lives.

Noah doesn’t “look autistic.” He is not “too affectionate” to have autism, and each success he has isn’t an indication that he is on his way to “outgrowing it.” Autism doesn’t have a look, a specified affection rating or a timeline. It is life long. There is no “normal” child buried beneath his autism. Autism is normal. Autism is Noah’s neurology. It is who he is. We hear the above comments often — mostly by well meaning people who just misunderstand who my son is. We need to change the conversations about autism. Today, I wanted to share the wonderful things Noah has taught me as a mother and as a person. Today, and everyday, I am so thankful for my little guy.

Here are five things Noah has taught me this year:

1. Throw away the measuring stick we use to compare our children.

What, exactly, do we have our children racing toward? Adulthood? I can promise you that we are in no hurry to arrive there! Noah has taught me to savor him exactly how he is today. To celebrate his 3-year-oldness and not whisk him from toddlerhood. Whenever and however he meets each milestone, we will celebrate! He is enough. He is more than enough — exactly how he is in this very moment. His life is his journey. I am so blessed to have a front row seat , but I do not have the steering wheel.

2. Words are not the only form of communication.

While we are busy rushing children through our adult world, we sometimes fail to slow down and enter theirs. Having a child with a speech delay has been exactly what I needed to learn to listen. Our kids may ask us to play with them or beg to curl up in our beds for the night; they may want carried into school or to eat their dinners on our laps. They are using their own language to communicate and they are begging us to listen. It must be exhausting keeping up with adults all day. What a relief it must be for our babies when we come into their space for a while. It’s surprising how much these amazing kiddos can tell us without a single word.

3. Autism isn’t about kids (or adults) being caught up in their “own little world.”

Autistic people aren’t oblivious to “our world.” Actually, they are in the very same world much more deeply than we may ever be. Many autistics can hear sounds that others’ ears filter out; they can see details others’ eyes are trained to overlook; they can feel all the textures touching their bodies. I have learned from many of Noah’s incredible therapists that, instead of demanding he enter “our world,” we come down to his level. We try to see things through his eyes. Noah may live in the very same world I do, but without him, I would be missing all of the most beautiful parts.

4. On self-stimulatory behaviors (stims): They are normal!

Autistic people may hum or rock when they become uncomfortable in a situation — just as someone else may bite their nails or twirl their hair. Some kids, like Noah, may bounce on their toes and flap their hands when they become excited. Heck, if I won the lottery, I’d probably bounce around and flap my hands, too. Unfortunately for me, I don’t feel so excited most of the time. But Noah, he does! Somewhere along the line, nail biting became a normal expression of nerves, and humming became an odd one. One of the biggest misconceptions about autism is that autistics don’t feel the full range of emotions that others do. On the contrary, I think Noah feels much more deeply than anyone else I know — his expressions of emotion just look different.

5. Negativity is built into our language.

We naturally lean toward the negative. We say things like “Ugh! I hate all this rain!” and then turn around and complain, “It’s so nice out, and I’m stuck inside all day!” Complaining is a habit. When speaking of autism, I often hear things like: “He won’t stop talking about_____” or “She’s obsessed with _______” or “Oh, he can’t handle______.” Noah has taught me a lesson in reframing. Noah isn’t “obsessed” with art. Art is important to him. He is very focused on his drawings. Noah isn’t “behind other kids his age.” He’s just developing at his own pace. He doesn’t “refuse to eat his vegetables.” He is working very hard with his OT so that someday, he might try them! None of these situations are negative — the ways we talk about them are. Instead of complaining about a situation, Noah has taught me to see the positive. “Look at all this rain, I’m so glad I have a coffee and a warm sweater! And I’m really glad I didn’t have a beach trip planned for the day!”

There is a stigma around autism that will remain until we open the conversation about it. Many parents may feel it is not my diagnosis to talk about. That Noah’s autism is his private medical information. Eh, you will see him run around on his tippy toes and flap his hands. You will notice that, unless prompted, he probably won’t speak to you and he probably won’t look at you. Rather than let false ideas run rampant and perpetuate the notion that autism is something to keep hidden, let’s talk about it! Rather than ask people to become “aware” of my son — let’s create a world where he is accepted for exactly who he is. This is Noah. He’s 3. He loves Lightning McQueen and all things art. He will do just about anything for an M&M. He’s got curly hair, blue eyes and autism. He may be different than others, but he is the most beautiful boy I know.

Originally published: May 17, 2019
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