It’s two a.m. and everyone is finally asleep.
I quietly sneak out of my bed and away from my room. Walking down the stairs in the middle of the night is tricky, but I have quickly mastered it and I can easily avoid the squeaky steps by skipping over a few. I don’t want to disturb the other people in this house. I don’t want anyone to know my secret. My dog Prince, perched at the foot of my parent’s bed, picks his head up and wearily gazes at me. Looking at me slowly he assesses my movements to decide whether the kitchen is my final destination – the only place, in his mind, worth getting up out of bed at two in the morning for.
I make my way to the basement. Even though it is refinished this place is still damp and dark. Slowly I move towards the left corner of the room –the one that houses my computer. As I sit down one hand starts the machine as the other reaches over and flips the switch to the built in dehumidifier system that lines the ceiling. A rush of air moves past me as it starts up and within a second the lull of the fan takes over. White noise. Pleasant and concealing. The fan serves to ease my fears of being caught. It’s gentle noise quietly drowns out the sound of my frantic typing. The fan is my protection. It is my safety net. For I do not wish to be heard.
As the computer slowly comes to life my head is spinning.
On the screen is a Google search box and I type in the words and phrases that live in my mind every second of every day. Phrases like red-flags, no eye contact, late crawler, appears to be deaf. Words like autism. And each night I read and reread the same websites from the night before hoping to catch something I missed, hoping to catch something that I know I did not miss. Hoping to find some clause in the text telling me this happens to everyone else, anyone else, but me. Hoping to find something that tells me that I am wrong and my daughter does not have autism. Hoping, if I don’t find that, to at least find some light at the end of the tunnel. I never do.
So, night after night I descend the stairs into the basement and search. The websites that dominate the top tier of the Google search results always filled my heart with fear; leaving me with more questions than answers. Websites that offer little to no hope for parents of children on the spectrum. Websites that tell parents of the hardships and struggles, but never of the joys. The organization that dominates the conversation doesn’t offer up anything other than doom and gloom stories. And this is what I read; hour after hour.
Even now that I know the truth about my daughter – the truth about all Autistics. I still, every now and again, theoretically descend those stairs to darker days and search. But now the focus of my frenzied searching is something completely different. I search with the hope that one day the websites dominating the first page will be ones offering up truth and light. I search, still, waiting for the day when the top website gives the whole truth. I do this, because I often wonder, would I have come to accept Mia’s fate easier if I had been told there would be happiness in it rather than having to figure it out for myself? Would I have learned earlier to believe in the competence of my daughter if I had, just once, found a website where an autistic person was speaking about their life rather than continually finding places where their words were stifled? Would I have believed them if I had?
I like to think I would have. Because when I finally found them, three years into this journey, I knew my search for hope had ended. It was instant that their truths and perspectives changed my life. It was only when I talked to Autistic adults that I realized the full potential my daughter possesses.
But, It should not have taken that long. The things parents find on the internet while looking for information on autism scares me. And I know the fear and pain behind each letter they type. I know what they are searching for..
So if, by chance, you have stumbled upon my website a midst a frenzied search for answers let me tell you this.. from the perspective of a parent with an autistic daughter. Yes, there are struggles and hardships. But there is joy too. And, there is competence. Yes, competence. And happiness; for you and them. Because your child with autism understands. They hear you. If you do not believe me, if what you have been told doesn’t allow you too, then let me help change your mind. Allow me to direct you to somewhere that will. Allow me to direct your search to a place where you will learn, firsthand, some truths about autism. From an Autistic.
Essay’s by Amy Sequenzia – a non-verbal Autistic.
Wretches & Jabberer’s – A Documentary where “two men with autism embark on a global quest to change attitudes about disability and intelligence.” This link will also bring you to their blogs (Larry and Tracy)