One of the most difficult things about being a parent to an Autistic child is the realization that almost everyone we parents come into contact with, when getting the diagnosis, have ideas about autism and what that means for our child, regardless if their ideas are based in fact. So many people have theories and opinions about what autism is or isn’t. There are endless charts and check lists meant to be helpful, yet they are all skewed and written from the point of view of a non autistic person or someone who uses spoken language to communicate.
Once you begin the evaluation process you are asked hundreds of questions. Questions such as, “How many words does your child know?” We answer these questions to the best of our ability and from the perspective that “knowing” means “speaking”. Zero, or maybe five, ten, oh perhaps twenty, we say with wavering confidence and this answer is then noted. “Does your child show interest in others?” “Does your child engage in imaginative play?” We are asked. And again, we do our best to answer honestly from what we’ve witnessed or believe we know.
But if we use spoken language, we answer these questions from the perspective of one who speaks, not from the perspective of one who does not. The idea that someone might be unable to speak, but knows a massive amount and can learn to write to communicate or someone might have a difficult time translating words, whether written or spoken to match their non word thinking, is never brought up. As parents, we do not hear this idea voiced and yet it is crucial to our understanding of our child. How different we might feel and understand our child if we were told that this may be our child’s experience of the world. We could be told about the body/mind disconnect and how that might manifest itself. We could be given the words of non-speaking children, teenagers and adults to help us understand. Why are parents not being informed of this?
Instead your child is observed, notes are made and a diagnosis is given. We parents are left with a word, laden with opinions, ideas, but few facts. People talk about the “science” behind various “treatments” and we are told that the only scientifically proven method is x. We are told that we must hurry as the window to help our child is quickly closing. We rush ahead, madly, blindly, we do as we are told. There’s no time to wait, to find other opinions, we must hurry, hurry. We feel the guilt and the horror of not doing enough. We must engage our child in a specific way. We must urge them to complete puzzles and force them to play with dolls or farm animals, we give them treats so that they’ll comply, we buy play kitchens and a variety of toys and when they finally show an interest in one, we watch to be sure they don’t show too much interest. Too much interest is a red flag, we are told.
When things do not feel right to us, we begin to do more research, looking for answers and we begin to form our own opinions about what’s really going on. But for many of us we just feel terror and confusion. Well meaning people give us advice. We are sent links and the names of specialists. Suddenly, many of us are deeply immersed in that surreal world of “alternative” medicine. Each person we see speaks with the authoritative voice of someone who knows, who understands, who is convinced this will make our child “better”. Yet few question what that word means. What is “better” and what does “better” look like for my child?
The sinking feeling that something is terribly “wrong” embeds itself into every fiber of your being. Almost everything you read about autism confirms that sinking feeling. This is a terrible thing that has happened. It makes sense that to you and your family, the focus is on “righting” what is wrong with your child. A child whose life would be so much easier were they neurologically like the majority of the world. But they are not neurologically like the rest of the world. This one fact is overlooked as we continue to pursue all that we are told and advised to do.
How do we conceive of something we do not understand? How do we see something we’ve not heard of or ever believed possible? How can we understand a neurology that is so different from our own? Autism. What does that mean? What does it mean for my child? How do we support our children so that they flourish? How do we best raise an intensely sensitive being who does not necessarily use words to think? These are the questions I would like to hear educators, doctors and all those who feel they are experts answer.
The things that are being said, all those recommended check lists and the questions asked by all those autism organizations and experts are encouraging us to teach our children that they are the problem. We are raising a population of children who are internalizing the awful message given to them… Our children, who will grow up to be Autistic adults, are getting this message from almost everyone they come into contact with from the moment they are given the diagnosis. It is a message that is hurting our children and hurts all Autistic people. Our children, whatever their neurology hear it,and those who have internalized it may go on to deliver it too. It is up to us to change the message.
Ask a parent what they want most for their children and most will say, “Happiness.” Yet so much of what we are told about autism and our Autistic children is ensuring the opposite outcome.