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Things No One Tells You About Autism

"Mom! I Think I’m Autistic.”

Those were the words that rolled out of the mouth of my twenty-four-year-old son one night as he stood between me and the TV show I was watching. I think I laughed as I asked him what he was talking about. Autistic? What in the world would make him think that? I knew a few people with autism and they looked nothing like him. They didn’t talk or make eye contact. They sometimes hurt themselves. They had severe cognitive delays. He was the opposite of all those things. He talked…a lot. He’s always made eye contact. He was always wicked smart. Gosh, he took his first college class at age 13. He graduated high school at 15. I mean, sure he had his quirks, but autism? How did this come about?

Looking for Answers

After suffering from debilitating panic disorder, treatment-resistant depression struggles with addiction, agoraphobia, and suspected ADHD for the better part of his life, he set out on a journey to discover what was “wrong” with him. As he explored various possibilities, there were things that almost fit here and there, but nothing completely made sense. Then, it dawned on him. It all absolutely fit under the umbrella of autism. How did we miss this for twenty-four years? What kind of parents were we? As he then obsessively researched every single aspect of autism, sharing it all with us every step of the way, the realization came and the guilt ensued.

Missing All The Signs

My heart was broken, not because he was autistic, but because I didn’t catch it. And how did I miss it? As we delved into learning about autistic traits, it was absolutely obvious that he indeed had ASD. From refusing to walk outside in the rain or get his hands messy, angry outbursts, and obsessively shutting doors when he was little to now pacing, perching, and fidgeting, it was there all along. He had so many traits associated with autism. He was constantly getting kicked out of classes and struggled to hold a job. He couldn’t handle crowds or read the room. He had limited imagination, friends, and interests. He had a habit of interrupting and talking incessantly about those interests without realizing others were not interested. He had severe anxiety, stomach, and sleep issues. He wrestled with eating. He was very attached to me and didn’t like to be alone or leave the house. He grappled with relationships and letting go. And, yes, even his extremely high IQ was another trait. The list went on and on.

The Past is in the Past.

I felt bad enough for missing all of that. Then, he scored 188 on RAADS-R and in the top 5% of autistic people on the other self-administered tests. The regret overcame me. How different could his life have been if I had recognized what was going on? How much more fulfilled could he have been if I had found him the proper resources? How much better could he have felt about himself? The “what ifs” endlessly swirled around my head. But I couldn’t focus on guilt. My son assured me that there was nothing for me to feel guilty about. We had work to do. It was time to perceive things differently, adjust expectations, and reevaluate boundaries.

On to Our New Ways

Here we are, moving on, accepting the things we can’t change, and looking forward to new confidence and possibilities while learning everything we can about our new life. I’ve gained a lot of insight through this whole experience, but mainly I’ve come to understand that I did nothing wrong. You see, autism spectrum disorder can look completely different from one autistic person to the next. Many traits associated with ASD can easily be missed or misdiagnosed for years. It is an arduous process to get an adult diagnosis, so if you suspect your child may be on the spectrum, don’t wait to have them evaluated. Having a diagnosis can change a person and their family for the better. ASD is both difficult and wonderful. These are the things no one told me about autism.

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