It’s interesting to note that the word awareness, when paired with the verb “to be” as in – be aware, is easily visualized and thought of as, “beware” which dramatically changes the meaning. It no longer is a word of benign information, but instead is a word of caution and fear. I do not think this is a mistake. I know it’s cynical of me, but I think Autism Speaks, the single largest organization involved in Autism and the creator of the “Autism Awareness” campaign, chose their wording carefully. I’d like to think I’m giving them more credit than they deserve, but for a company that spends more on PR than they do on actually helping families and those who are Autistic, I don’t believe I am.
My awareness of autism has dramatically changed over the years. It has changed because of the information I’ve found and been given. In the beginning, my information came from books, autism organizations, various professionals, a couple of neurologists, our pediatrician; surprisingly the more “credentialed” the person was, the more likely they were to admit how little they actually knew about autism. In retrospect this was my first real lesson in awareness – beware of organizations and those who believe they “know” all about autism, whether that is the cause or which specific methodologies, treatments or therapies your child will be best served by, because they do not know, despite how vehemently and persuasively they may speak.
As time went on, I became increasingly aware of my own misery. The common misery supposedly shared by us parents, dominated the conversations surrounding autism. I became fixated on the “fact” that autism was the cause of my misery and set about removing it from all our lives. This is where awareness took me. This was what I knew and understood. But this is not the sort of awareness I want to be a part of. This is not the kind of information I wish I’d gotten, nor is it the information I hope other parents and families will receive. Those first few months after receiving the diagnosis are critical. How we talk about autism and by extension our Autistic child changes all that we then do and where we focus our energies.
Autism did not cause me to be miserable. I was concerned and I was scared, but my daughter’s neurology was factually not what frightened me, it was what I was being told about her neurology that terrified me. Had someone said to me when we were still trying to get her out of diapers when she was seven years old – “it’s going to be okay, here are a couple of different things you can try, but remember most people do get out of diapers, eventually” I would have felt a little calmer. Had someone said to us when our daughter was six years old, “read to her age appropriate material, teach her age appropriate lessons” I might have felt confused, I might have had a great many questions, but I wouldn’t have felt the fear I felt when we were informed she could not possibly be placed in a school with her same age peers. Had someone said to us when we first received her diagnosis, “presume competence, she can and will learn, but she will learn at a different pace, she will learn differently than you might expect” I might have felt concern, but I would not have felt the kind of despair I felt when I questioned whether she was capable of learning at all.
If we want to have more awareness about Autism then let’s have it come from those who are actually Autistic. Because if you are like me, these are the people who will change your views and shift your mind away from the “tragic” to the far more helpful information that might actually help you help your child. The kind of information that opened our minds to different forms of communicating, different ways of learning, all those things that have actually aided us in helping our daughter. Our judgments about her neurology and all it meant to us and her, did not help us do anything but feel more fearful and miserable.
Below is a small list of people I know and am in touch with. I’ve provided a link to their blog, book(s) or film to each of their names. I will feature more people who have helped me in my growing awareness during this month of April. I’ve separated those who can speak, but depending on the circumstances lose speech, with those who mostly do not speak, but ALL communicate. Want to become aware? Read their words.