The roller coaster I call “autism” is less actual and more a description of my emotions, expectations and judgments surrounding specific things such as communication differences, internal issues, pain perception, sensory issues and the different ways in which Emma takes in information as opposed to the way my (more often than not) non-autistic brain works. (My friend, AspieKid calls brains like mine NT-NOS, which I think is a hilarious and fitting acronym.) It is a “roller coaster” of my own design and construct. A roller coaster being an accurate description of my emotional state, something I’ve grappled with my entire life and certainly well before I ever met my husband and had children. Suggesting “autism” is the root cause for those pre-existing twists and turns my emotions tend to take or pinning the psychological upheavals I’m experiencing onto “autism” is not only wrong, it’s dishonest.
The truth is, I’ve always been a bit high-strung. I live in New York City, a city whose inhabitants wear their neuroses proudly. Neuroses in New York city are treated the way a runny nose is looked upon in the mid-west. No big deal. New Yorkers have melt downs at the drop of a hat. I’ve seen fist fights break out between grown men in the middle of an intersection because of a perceived insult, people routinely scream at each other and cut each other off while driving. Moms pushing babies and toddlers in Hummer-sized strollers wield them like tanks plowing a path for themselves along clogged sidewalks like Moses parting the Red Sea. People think nothing of getting into loud arguments with lovers, neighbors, friends and strangers in the middle of the sidewalk, forcing pedestrians to walk around them. It’s a city of ids and super egos. It’s a city that is (perhaps) an exaggerated version of what one sees anywhere in the world. People are capable of some pretty dreadful behavior. Add a child with a different neurology to that already fragile, high-strung mix and you’re going to get some interesting results. To then conclude that autism is to blame, defies all logic. No one would do that. Yet people blame their bad behavior, their inability to cope, their sadness, depression and general irritability on their autistic child all the time.
Suddenly it’s autism and Autistic people who are a “burden” to society. Autism isn’t a “burden”. It’s the negative views of autism, it’s the autism = untold horror, it’s the perception of autism and the lack of understanding and services, the lack of training and programs in our schools so they can help our Autistic children learn in a way that will ensure they flourish. The “burden” is not our Autistic child on society. The “burden” is the lack of support and adequate help families need so they can better support their child, giving them the sort of assistance they need to thrive and flourish, a child who will one day become an Autistic adult and, in an ideal world, an active member of society. We have to move away from this idea of Autism = burden. Autism = tragedy. Autism = _______ fill in the blank with a negative word. We need to abandon our preconceived notions of what a non-speaking Autistic child cannot do. We need to open our minds to the idea that our children are capable of far more than we may believe or can fathom. We need to begin looking at what is good about Autism and the countless ways in which Autistic people can and do contribute to this world. We need to remove the stigma and negativity and replace it with a more balanced and yes, positive view.
Imagine a world that includes Autistic people, accommodates Autistic people and stops shunning, restraining and abusing them. A world in which it is not okay to have seclusion rooms and restraints, where a non-speaking person is treated with respect and without prejudice and where it is not assumed that because they do not speak they have nothing to say. A world where people finally understand the burden isn’t the Autistic person, whether child or adult, it’s the lack of services, the judgments and the scare tactics being used. Autism is big business and there is no better way to ensure dollars continue to pour in than when we are terrified. Let’s change that.
Having a child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have. Having an Autistic child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have. One can say that about a great many things in this life. Let’s stop blaming Autism and our Autistic children for the ills of the world and the bad behavior displayed by people.
Emma and her infectious laugh