I have twins. They are now eight years old. Lily and Maggie. After their first birthday my father noticed some things about Lily that he worried about. He told me I needed to go to the doctor and express some concerns. So I did. I had mentioned to their pediatrician before that my twins were definitely very unlike each other. But each time I said something the doctor would simply say they are in fact, two different people. But this visit would be different. As he witnessed my daughter Lily have a meltdown in the hallway because she was fearful of a scale to weigh her on he took a longer look at her in his office that day. He diagnosed her with a developmental delay and assigned us to a neurologist.
I’m not sure what I expected when I went to that office visit with my children. I am not sure if I expected anything at all. I was uneducated about autism. The neurologist spent some time with us and diagnosed Lily as autistic. At this point in my life I was devastated. It was presented so negatively. This molded my anguish. I had no idea what the word autism entailed. I could not fix it. And at this moment in time this was all I wanted to do. Fix it. It wouldn’t be until later I would learn there was nothing to fix and that autism was not a negative word.
After my daughter’s diagnosis we were offered therapies which ranged from OT to Speech and others. We settled with speech and occupational therapy. At one of my kiddos sessions a therapist mentioned to me I should join facebook and meet other people with children like me. But instead I decided I’d try to learn more about people like my daughter. I noticed in the forums I was reading that the answers I was looking for were always answered by people who were #actuallyautistic. In between looking for reasons why…..and how to ‘cure’ my daughter I started listening to the advice of other autistics who gave me far more information that any books I’ve ever read collaboratively. I started reading more books about sensory integration and learning what the body needs to communicate and that all behavior is communication. The autistic people in life that I have had the absolute joy of meeting are by far the most wonderful people I have ever met in my life. I have met many different types of people as this used to be a part of my job when I was working before I had children. But the people who have helped me to see that autism is not something that needs changing….that it is not something to be looked at as a disease…that you cannot simply be cured of yourself….these are the people that have helped me to pave the path for my daughter to be a part of this world and hold her head high knowing that she is the best Lily she can be and that she is beautiful just the way she is if not more beautiful than the average person you’ll meet day to day on the street.
The people I have connected to on facebook who are autistic have become some of the best friends I’ve ever had. They remind me of what humanity is made of and what empathy truly is. They teach me that my daughter can and will grow and grow into an amazing human being not much unlike the lovely people I have come to know on social media.
And if there is one thing I have learned from them it is to believe in your instincts. And sometimes when you are looking for an answer to something if you don’t get the answer you are searching for it is probably because you are not asking the right questions. Autism is not a disease. It is a difference.