This statement is not totally truthful.
I do care, a lot, what people think of my son. How other people view Autism affects how he is treated, so it’s very important that I do my best to explain his Autism to the people in his life. But explaining a spectrum disorder to people who don’t live in his world every day, who may only visit on his good days, can be a daunting task.
And our definition changes everyday.
I got lucky. My mom has been an Occupational Therapist for nearly 20 years, so when we first realized Simon wasn’t meeting his milestones, I was able to get help right away. From day one, she was able to point me in the right direction, helped me navigate paperwork, and gave me tons of resources to learn about childhood development. In our little bubble, ASD wasn’t a scary diagnosis, it was just a medical term and our lives were normal to us.
Outside of that little bubble, we were met with a full spectrum of speculation, questions, negativity, and disregard. In the earlier months, when we were navigating being first time parents and everything that came with being a special needs family, it was just easier to shut everyone out. We didn’t have the time or the energy to keep reaching out to explain our situation, because most of it, we didn’t understand either. We were just surviving each day. And we lost a lot of relationships along the way.