Center for Public Service Blog

The Passport: A Parent's Journey With a Child on the Autism Spectrum

Passport BlogBy Christina Bass, Faculty Member, Educational Studies

“I am sorry”; three of the most powerful words that restore relationships, repair a broken heart, and help us to release the power of forgiveness. These same three words serve a different function when referring to autism; they become the most common initial response received from others when they find out that I have a son on the Autism Spectrum. Is this “apology” that society has not yet truly embraced the brilliance and beauty of autism? Is it the lack of understanding of autism or the deviation from “normalcy”? While the world of Autism is not without its challenges, our acceptance becomes a miraculous journey to expand our own boundaries of patience, understanding, and unconditional love.

I often wonder what people around me think as my son has a neurological storm (aka “meltdown”) in public. Although the looks of disgust and judgment are more than obvious, suggesting that my son is undisciplined and my parenting skills are lacking, I divert my energy to step into my son’s shoes and then celebrate the fact that each time we trek out in public, or are surrounded by many people, it is a triumphant moment. Trying to process the buzzing of fluorescent lights, the multiple voices, the stimulation of the visual environment, along with functioning within the behavioral boundaries that I have established would not be a difficult task for most. However, I have realized the extraordinary amount of energy and focus it takes for my son to process all of the sensory input and maintain a sense of calm. The importance of understanding my son’s world allows me to be that tourist with a passport now able to travel the globe. 

Although I had worked with special needs students for several decades in my professional walk, I found that the personal side of Autism is very different. My experiences have taught me that we need to begin the journey by granting ourselves permission to feel the human side of Autism. We should not feel guilty that we sometimes find ourselves frustrated with the disorder. However, when we are able to separate out the person from the disorder, we are reminded of the precious gift we have before us, and unwrapping this gift can be as simple as finding the strategies and techniques that work for our loved one. Our house is a warehouse of stress balls, heavy blankets, tents, tunnels, trampolines, climbing areas, exercise bands, and anything that can be used for a crash mat. Opportunities for “castle time” where my son can burrow into blankets, and feel the closeness of being a “squished pancake” between bean bag chairs allows his sensory system the input needed to be grounded. Tying an exercise band between chair

Our house is a warehouse of stress balls, heavy blankets, tents, tunnels, trampolines, climbing areas, exercise bands, and anything that can be used for a crash mat. Opportunities for “castle time” where my son can burrow into blankets, and feel the closeness of being a “squished pancake” between bean bag chairs allows his sensory system the input needed to be grounded. Tying an exercise band between chair legs, allows for movement and sensory pressure while homework is being completed. When my son is feeling overwhelmed deep massage on his legs or back, and even pressure on his forehead (my son likes to wear ankle weights as a crown) provide the escape he needs to focus again. Opportunities to spin in circles (by himself, on a swing, using a desk chair, Sit ‘N Spin) allow my son a feeling of security. Cradling, while rocking back and forth (me holding him or in a sling chair/hammock), or making his body into a pretzel position have been successful strategies that diffuse the meltdowns before they exacerbate to full-blown explosions. 

Positive reinforcement in the form of “warm fuzzies” (small pompoms purchased at any general store) pave the way to success for my son. Because his ownership in the process is important, his “warm fuzzies” container is one that he has selected or decorated, and we work together to determine the goal, the reward, as well as the consequences. My reminders are frequent, consistent, and positive reinforcement is immediate. In providing this positive reinforcement, I have mastered the art of celebrating the small stuff; his verbal expression of emotion in lieu of throwing something, completing all of his math homework in one sitting vs. getting up every 30 seconds, or even his random acts of affection he initiates in his overwhelming empathy for others. Using small time intervals and a timer allow for my son to meet with success often. As he has learned to master each time interval, increasing the time periods, provides him new goals to work towards. 

The use of a personalized picture schedule provides a meaningful tool to help establish daily routines and expectations. Even personal pictures of different facial expressions (happy, sad, angry, frustrated, excited, confused, etc.) help my son to be able to communicate his feelings when the words do not come. The beauty in picture schedules lies in their flexibility to be changed as your child grows and needs/routines change, and their portability allows them to be taken with you wherever you go. 

I have learned to refine my communication skills, becoming very intentional and specific in what I communicate. For example, I told my son that he needs to take his hat off upon entering school and he did. However, he also walked a few steps into the hallway and the hat went right back on. For some, they would interpret this as disrespectful and testing the boundaries. For my son, he did exactly what I had asked him to do and removed the hat when he entered the school; I never told him that the hat had to remain off until he went into the classroom. While the precision of communication is key to relating to someone on the spectrum, I have found it is equally as important not to overload my son with multiple concepts at one time, and communicate exactly what is necessary, in an encouraging and affirming manner. Being proactive in my communication has helped to decrease the frustration for everyone and also modeled a positive form of communication that my son attempts to use. 

The world of autism, or any disability, can be complex and overwhelming especially if we allow it to be. I have found that if we spend our time focused on what someone with special needs “lacks”, we often miss the beauty of the individual before us. My own journey as a parent with a child on the autism spectrum has reminded me to embrace the fact that disability does not mean “dis-abled,” but instead means that we have the wondrous blessing of a journey into the unknown, where opportunities to expand our own knowledge base and skill sets are endless. I have learned not to be “sorry” that my son was diagnosed with an Autism Spectrum disorder, but instead welcome the beauty in the differences.

The views and opinions expressed in this blog are solely those of the author(s) and are not attributable to Kaplan University.



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