Monday, 30 April 2012
There’s been a lot of fussing and name calling in the ASD blogosphere of late. It is centered not upon vaccines or biomedical treatment but on the call by some – including Thinking About Perspectives, a blogger group I am a member of – to bring a positive light to autism. A lot of folks are embracing this view, but there are many who are frustrated, sad, and angry who are feeling alienated because their feelings don’t quite match up with all this positivity. And that makes me sad. Because I hate the thought that people are out there, once again feeling like others are negating their own emotions.
Speaking for myself, I don’t think autism positivity is about denying the very real challenges being autistic or raising a child with autism presents. If it were, then I’m afraid I would have to side with those who are against it. The cold hard truth about autism is that each person affected by it is dealt a different set of cards. And some of those cards are poor hands indeed. What I mean by that is that life is certainly going to be easier for those who can communicate with others. It is obviously going to be more pleasant for those whose sensory issues do not overtake them in a vicious assault every time they leave the house. Of course it is preferable to be toilet trained than not, to be able to read than not, and to have the ability to make your own choices. Yes, I want those things for my child. I’d be crazy not to. Yes, I am terrified he might not. Because not having the freedom to direct your own life is a loss – and one I would have every right to grieve. Without some sanctimonious autism cheerleader telling me how very happy I should be about it.
Which brings me back to my point. Autism positivity is not a vast conspiracy to make everybody autistic. It is not an attempt to discourage therapies that might improve the quality of lives affected by autism. And it is not a movement to create guilt in parents who are struggling with very real issues related to the most severe cases of autism.
Yes, some of the hands dealt by autism have been tough. But not all of them. We call it a spectrum for a reason. There are a very large number of people on that spectrum whose lives are fulfilling and happy. People who have learned to navigate the neurotypical world. Children, students, parents, spouses, coworkers, teachers, family, and community members. People whose very unique perspectives and talents have contributed to our world. And even some extraordinary minds who have helped to make it a better and more beautiful place – scientists, artists, engineers, and other great thinkers.
And here’s the thing. Those folks have to walk around hearing about epidemics, cures, gene therapy, social dysfunction, and disappointed parents. They have to endure public discussions on their sexuality (or lack thereof) and answer personal questions on whether or not they understand the concept of love. They know that perception of autism runs from people equating it with mental retardation to thinking it a “soft” condition that doesn’t even exist. And the only people representing them on TV are geniuses or superheroes. Given those roles from which to choose and identify with, can you blame them for wanting to present their own view of autism? To want to shout from the rooftop that they are proud of who they are? That they like themselves just fine? That it is okay to find humor in their differences and to enjoy some of the perks of being autistic? For there are perks. And they have a right to like those perks. They have a right to like themselves. They have a right to not feel like a walking tragedy. And they have a right to demand the world not treat them like one.
I joined the Autism Positivity 2012 Flash Blog Event because I want to send a message to the young people who are still fighting in the trenches of acceptance. Those kids who get up every day and battle loud, smelly, crowded hallways just to get to classrooms filled with students and teachers who don’t understand their differences and don’t appreciate their contributions. I have seen those tears throughout my years of teaching. I have hid them in back rooms of the library to cool off tear-stained faces with cold cloths. Kids whose peers, teachers, and even family don’t begin to understand how very brave and tough they have to be to function in what is a daily battlefield for them. All while being told that there is something terribly wrong with them.
Yet I don’t even know if my child will be “high functioning” enough to even have this to look forward to. I hope. And, yes, I pray. But his cards are still face down on the table.
No, I am not in denial. I have seen severe autism. It is still way too early to know what choices my son will have available to him. But even if the dreams I have for him are not realized, I refuse to not take joy in what I have in him. I refuse to not be amazed by the wonders of his mind. I refuse to allow my own grief –which I confess to experiencing every day – to cast a shadow on his love for life and his pride in himself. Every human being on the planet deserves to be celebrated and cherished – not matter what challenges they face.
For I know that the roots of his self-worth are reflected in my eyes. Mine. And, no matter what, I want him to like what he sees.