My 1 in 54


 When April rolls around each year, I prepare for increased sensitivity to the awareness my family lives with every month, every day, every hour–Autism Awareness. In 1972, the Autism Society of America began celebrating Autism Awareness Week in April. This week eventually evolved into April’s recognition as Autism Awareness Month. Approximately one percent of the world’s population has autism spectrum disorder. Furthermore, the US occurrence is 1 in 54 children (CDC, 2020).

Let me repeat that 1 in 54 children.

My youngest son Matthew is MY 1 in 54.

Reading those words stings a bit. I love Matthew, all of Matthew: his brown hair, his long eyelashes, his sassiness and sometimes brutal honesty, his remarkable memory, and his autism.

Do I love the challenges that accompany his autism? No.

Would I make life “easier” for him if I could? Yes.

At the end of the day, I cannot remove the challenges or make life easy. I can provide him with every opportunity to become the best version of Matthew possible. Helping him get there is what keeps me up at night.

If I am honest, we need to change Autism Awareness Month to Autism Acceptance Month.

In the thirteen years since Matthew’s diagnosis, awareness has improved each year. In the early days, when I said Matthew was autistic, I received a question in return — “what’s that? what’s autism?” Today, however, when I explain he is on the autism spectrum, I am met with, “my cousin is on the spectrum” or “my neighbor’s child is autistic,” and so on. 

Awareness has risen dramatically; acceptance has a way to go.

In all fairness, the entertainment industry continues to make progress. Recently, several shows featured autistic characters like Max in “Parenthood” and Dr. Sean Murphy in “The Good Doctor.” Both characters provide reasonable glimpses into the lives of young men living with autism. A new children’s book series, “A Boy Called Bat,” depicts the life of an adolescent on the autism spectrum. Each of these only reflects one person’s experience, though and often does not reflect the many different challenges faced by all individuals living with autism. Autism is defined as a spectrum for a reason — it impacts each individual and his/her village differently.  
If you know one person with autism, you only know ONE person with autism.

The goal of awareness is acceptance. Awareness without acceptance is like an empty promise, a half-written letter, or an unfinished painting.

As much as this increased awareness in the entertainment industry lifts my spirits, it does not erase the lack of acceptance we face every day. Thankfully, Matthew enjoys acceptance in his village. Unfortunately, we do not always find acceptance when we leave the village: The looks we get in Target when my 5’10” teenager gleefully recognizes all of the new Blues’ Clues toys; the stares and snickers from his peers when Matthew walks into school wearing his headphones and carrying his beloved Buzz Lightyear figure; the eye rolls from other patrons when he speaks loudly in a restaurant.  

Acceptance can be a difficult concept. 

I get it. When you see Matthew, he looks like a fairly typical teenage boy. But because his autism isn’t physically evident, at first glance, one might see his earphones or his iPad and immediately assume he’s addicted to screens or anti-social. A closer look reveals a few clues that he may not be your typical teenager: his elastic waist pants, slip-on shoes, band-aids on chewed fingernails. Listen closely, and you may hear him repeating scenes from a movie or singing the same chorus of a song over and over again. Ask him a question, and you may or may not get an answer. Without taking the time to see him, really see him, and ultimately know him, one really cannot accept him.
Autism Awareness
Photo credit: Evelyn Laws Portrait Art

Why acceptance? Why is this my rant today?

It is important.

For every person. 

At every age.

In all manners of being.

We have to teach our children that people don’t grow out of disabilities, they grow up, and they grow into their disabilities. Their timeline for hitting developmental milestones is different. We must accept them. Not just when they are sweet toddlers or rambunctious elementary school children, but also when they are quirky teenagers and eccentric adults. Just like each one of us Matthew, and his peers, want to be accepted and included.

True acceptance means meeting special needs or differently-abled individuals where they are. This is crucial.

Presently, how can you be more accepting?
How can you teach your children to be more accepting?
Begin with asking questions. Ask questions of your friend with a special needs child. Let your children ask questions. Do not shush them when they ask “why” or tell them to look away. If you do not know the answer, fess up, tell your children the truth, then research the answer and share with your child.

Encourage your child to make friends with those who are different and better still lead by example and do the same.


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