Autism Awareness: Living a Life Unknown


april autism awarenessApril is Autism Awareness month. I wanted to share a perspective of autism that has greatly affected my son, my family, and many others I know — one that goes beyond the list of signs and symptoms. Children on the spectrum do not have the ability to understand how the world works. This inability to infer the “grey” in life and understand social and emotional interactions results in a whole other mental health experience: fear and anxiety of the unknown.

Having autism is like waking up and living the day blindfolded, full of fear of the UNKNOWN that lies ahead.

Can you imagine living a life of unknown day after day? A day where fear is inserted in some way, shape, or form? Imagine everything in the world you see and know does not make sense and feels as if you are on a foreign planet. Each day is a new battle for survival.

Often children with autism learn and live very black and white. They cannot infer most things, and unless your life and events happen the same day and time every day in a way that is predictable for autistic children, the day is fearsome and unknown. This is extremely important to understand during the younger years so we can create an environment that is safe, routine, and a “safe haven” for them. Getting a grip on this fear and anxiety helps the child understand and develop trust with parents and caregivers. It fosters an environment they can grow and develop with as few hindrances in life as possible.

Every day is a battlefield, to some extent, where your enemy is UNKNOWN.

For us the enemy may have been the grocery store, a new house, family he hasn’t seen or met before, a “FUN” birthday party, family vacation to the beach, Center Grove Orchard, a substitute teacher, a different bedtime routine, daddy working late, new shoes, etc. I will sum it up to ANY change or newness to life, whether good or bad. I was always on guard and lived much of Easton’s early life with my own unknown and trying to understand how he thought so I could prevent the outcome.

Will my child be able to handle the grocery store today or will the sounds and strange people send him into a panic causing tantrums and potential emotional pain from fear? Will we be able to have Thanksgiving with family this year or will it be too overwhelming and potentially cause mental health problems for weeks after? Because of picture day at school and change in routine, my son went into a fearful state for six weeks. He cried every day at school, and his fear spilled over into every other aspect of life. We couldn’t attend one of my best friend’s daughter’s birthday parties because he couldn’t handle the change and unknown of new faces even with preparation.

Autism is a diagnosis with a cure UNKNOWN and a treatment plan UNKNOWN for each child.

It is a diagnosis that every child on the spectrum must live with. It has no known cure or treatment plan regardless of age of diagnosis or where you fall on the spectrum. It is a diagnosis that, most days, leaves parents and professionals with a guessing game on what is best for their children. It is a medical diagnosis for which most private insurance companies do not cover services such as Applied Behavioral Analysis or sometimes even Speech Therapy to help the child with early intervention if non-verbal. It is a diagnosis that the government currently does not recognize and provide its own waiver for. There is over a three-year wait to have a child qualify for the Health and Disability waiver in the state of Iowa unless they fall so low on the spectrum they are considered mentally challenged with an IQ test well below standard age.  Without a waiver, an autistic child and family cannot afford or even have the opportunity for several of the services needed for the best outcome. It is a diagnosis that makes education for a child on the spectrum extremely difficult to manage.

Language and communication is an UNKNOWN that affects every area of parenting.

The hardest obstacle as a parent of a child with autism is that unlike with typically developing children, you can’t explain life in verbal terms. Language is another enemy and really means nothing unless modeled in visual terms they can interpret or experience. It would be like talking in Japanese to an English-speaking child. They have very little understanding of the world and how it works, and they certainly can’t internalize their actions and feel how that affects others. The combination of the psychological disability of emotional unawareness and how to see and express those emotions is debilitating from every angle. 

// RELATED CONTENT: Autism Resources in Des Moines //

This post was originally written in 2016 and updated in 2023.

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Jaclyn Strawn
Jackie is living and journeying through life with her husband, Andy, and 5 year old special needs son, Easton. Jackie has a passion on navigating life and learning as much as she can about learning differences to provide her son with as many opportunities in life as possible. She has a true heart for connecting with other moms and experiencing life together. Jackie's perfect day would include: waking up to a good cup of coffee with her husband, followed by testing a new recipe out in the kitchen, dinner with friends and capping the night off with a game night with her family.


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