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October 7, 2008

What Does Autism Mean to Me?

While eating at one of our favorite restaurants, my friend and our waitress, asked me this question after she’d finished proofing my book.  It was a question I had never been asked before, and one I had no experience in answering.

How do you explain autism to someone who is not “affected” by it? How could I convey my experiences in such a way that she would walk away more informed or gain a deeper understanding and sense of compassion for those “different” than her?

So, I did what anyone else would have done had they been standing in my shoes. I took a breath, and said, “I can’t tell you what it means to you, but I can tell you what it means to me.”

It’s been over 4 years since I heard the words, “Nicholas displays autistic-like behaviors”. Since I didn’t know anything about autism, I felt like I had been punched in the gut with a sledgehammer.

I had been raising Nicholas alone since birth, and I thought I could handle anything. Yet, I didn’t know what to do with this information.

It took a few days for the impact of the words to really hit me. Then I cried.

I felt absolutely alone, and I didn’t know where to turn for answers or help. After all, it had been my son’s Californian pediatricians who said there was “nothing with him”. That he was “just a boy, and they’re all delayed.”

Then I got angry.

I felt betrayed by the medical profession. I felt Nicholas had lost valuable time.

Feeling helpless, I turned to the internet. I typed in “autism” in the search box and hit enter. Let’s just say, I wouldn’t recommend this course of action for any newly diagnosed parent or family member.

I was overwhelmed! How was I expected to sift through all of this? Especially alone?

As I browsed one site after another, I became even more confused. There was way too much information on supplementation, therapies, and diet. And what exactly was gluten?

The years that followed seem like a blur now, and there are times when I feel I haven’t learned anything because information is constantly updated.

One thing is for certain, I am more informed, and I’m doing my best.

So, let’s get back to the question.

For me, autism is happy, smiling, laughing, full of joy. Autism also has its down times when there’s too much going on (i.e. large crowd or loud restaurant) and it becomes difficult to process everything simultaneously.

Autism also has an amazing memory where nothing is forgotten.

But more importantly, autism is loving, sweet, caring.

So, I don’t know what autism means to you, but I sure do know what it’s meant to me.

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