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Understanding Autism: A Personal Journey

Author: Aimee DeCarlo

Autism Spectrum Disorder (ASD) is a neurobiological condition that affects communication, social interaction, and cognitive function. As a mother of a college student with high-functioning autism, I've learned firsthand how challenging and enlightening this journey can be.

When my child received their diagnosis, it was overwhelming. I had envisioned a specific future for my child, one filled with happiness and health. The diagnosis brought uncertainty, and I felt unprepared. I remember telling our counselor, "I don’t know how to be an autism parent." She reassured me, saying, "You absolutely do because you've already been doing it for nine years." This helped me realize that despite the diagnosis, I had always been their mom, and we were managing just fine. Now, we had more resources to help us navigate.

There are many misconceptions about autism. People often think of extremes—those who are nonverbal and frequently stim or associate autism with geniuses or savants. However, many on the spectrum, like my child, have high-functioning autism, which is often misunderstood. They may seem “normal,” but there are subtle social and communication deficits that can lead to misunderstandings.

For example, in elementary school, my child would scream in another kid’s face to initiate play. When I asked why, they said, "I wanted to play with her." I explained that next time, they should simply ask, "Do you want to play?" Another time, they stared at a classmate’s hairbow without saying anything. They liked the bow but didn't know how to express it. I taught them to say, "I like your bow," instead of just staring.

My child also struggles with reading facial expressions, interpreting tone, understanding sarcasm, and emotional regulation. They have difficulty distinguishing reality from fantasy, especially when it comes to movies. For instance, after visiting Harry Potter World, they believed Harry Potter was real because they saw his castle. We've had to explain repeatedly that movies are make-believe.

Sensory issues are another challenge. Strong smells, loud sounds, certain fabrics, and even food textures can be overwhelming. For years, I thought my child was being difficult about brushing their hair, only to discover their scalp would get red and welted from mild brushing. They eventually chose to shave their head to avoid the pain.

Literal thinking is also a part of our daily life. In elementary school, my child kept giving pencils and erasers to another kid who promised friendship in return. Another time, they emptied their piggy bank because a classmate promised a trip to a water park. These situations taught me how vulnerable they were to manipulation.

Social isolation is a significant issue. We've had birthday parties where no one attended, and Girl Scout meetings where the other children ignored my child. Despite these experiences, my child would often mask their true feelings, trying to fit into a neurotypical world by mimicking others' behaviors, which sometimes worked and sometimes didn’t.

Now in college, my child excels academically but still struggles socially. They often eat alone and have few friends. When they try to explain their challenges, they're met with comments like, "You don’t seem autistic" or "You’re not autistic enough." There is no "not autistic enough." Autism is a spectrum with varying degrees of symptoms. Understanding and compassion are crucial.

My child has undergone various therapies and works hard to fit into a neurotypical world. Comedian Hannah Gadsby described autism as being the only sober person in a room full of drunk people, highlighting the communication gap. This analogy resonates with our experience.

Accepting themselves and their autism has been a long journey for my child. It took years for them to feel comfortable sharing their diagnosis. They often face comparisons to TV characters like "The Good Doctor" or "Sheldon Cooper," which oversimplifies their experience. Autism looks different for everyone.

People with high-functioning autism want friendship but may not know how to achieve it. I hope more people take the time to learn about autism and show compassion. I've seen my child work incredibly hard and make significant progress, yet they still feel alone and misunderstood.

Here are some resources to learn more about autism:

Understanding and compassion can make a world of difference for those on the autism spectrum.

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